Tag Archives: POTs

Dysautonomia – what did you say that was?

Global Dysautonomia Awareness Month copyHere’s quite a good explanation of the basics of dysautonomia. I notice she includes CFS (chronic fatigue syndrome) in the list. There is good science behind the idea that fibromyalgia is dysautonomic as it looks to be a form of hyperadrenergicPOTS. But I wasn’t aware that CFS has been included. It’s not that surprising though as some doctors (one in Australia that I can never remember the name of in particular) insist that up to 96% of patients with a dx of ME/CFS have some form of dysautonomia. But as Ramsay felt that a dx of dysautonomia meant a patient couldn’t have ME it’s a bit confusing.

Symptoms are very varied to the point where it has been said that each patient is different and certainly my Cardiologist agrees with that.

Death rates have not been measured although it seems to have a similar rate of suicide to other poorly treated chronic illnesses and there are a number of reports of sudden death similar to those associated with ME/cfs. As many of us have serious lung and Blood pressure problems it doesn’t seem that surprising that deaths happen. Studies in ME/Cfs show that heart failure is the number one cause of death with suicide coming in joint second with cancer – some more unusual cancers being oddly common among ME patients.

Talking anecdotaly I have come across a few people with a single diagnosesstanding usually POTS or IST without blood pressure problems or anything else. The symptoms of POTS and IST can be pretty horrible on their own but there’s definitely a difference in degree compared to those of us with ME/Cfs and/or fibromyalgia to go with it.

Most people I know with ME have some kind of orthostatic intolerance. Mine is pretty bad these days. Can’t stay upright for very long without becoming nauseous, light headed breathless and blacking out (pre-synocope).

dys5I don’t know what the end result of any research will be. There are tentative (poorly funded) moves to separate out the various forms of ME to get more accurate dx and hopefully treatment. It will very likely show that dysautonomia is either a form of ME or caused by ME or isn’t ME, but is dysautonomia.

One day we hope there will be suitable treatments that can put us into remission. But so far, that just isn’t the case.

Saw a GP today and hit the “they don’t know what to do” wall. Back on steroids but feeling pretty fed up. She did say she’d talk to my usual doc but she really wanted to refer me to another (insert very rude word here) neurologist. I refused.  Presently sofa’d – hope the steroids help.

Dysautonomia Awareness month

autonomic systemIn the slightly strange world I inhabit I know quite a few people around the net who either have some form of dysautonomia or have one of the many co-mobidities that we have and so know about dysautonomia, even if they don’t have it. This can give me the false impression that everyone has heard of it and at least, has a general idea of what it is.

Dysautonomia isn’t well known and part of the reason is that it is supposed to be rare. The most common form is POTS with NMH; that is postural orthostatic tachycardia syndrome with neurally mediated hypotension. The people with this get tachy when upright and their BP can drop like a stone. A lot of people with this have low blood volume.

fight flightHyperadrenergic POTS is even rarer. We get tachy when upright and our BP will shoot upwards and for those of us on the “combo” end of things it will nose dive and shoot up again. It’s because the normal fight or flight responses are stuck on “ON” mode. This comes with the added complication that while we seem to be pumping out the adrenaline (ephinephrine) which is changed into noradreneline (norepinephrine) it might never really make it to dopamine, or if it does, not much dopamine is made. If it is made the uptake is poor and if the uptake can cope even a little, the re-uptake is bust. This is probably the root of my tremor and possibly the myoclonus too.

The depressed immune system means we have fun with infections.

Then in a small corner of rarity is IST – inappropriate sinus tachycardia. We have tachycardia all the time. In my case it’s around 100 (without meds) when I’m sitting still and can get down to the high 80s if I lie still – but often can’t do that. Upright it can get up in the 150s which is mild compared to some folk.

IST is thought to be a form of POTS but the medical jury is still out on that one. As there is very little research on IST – less than other POTS forms, it seems unlikely we’ll get many answers any time soon.

Other symptoms are brain fog – I hate it – confusion, memory loss, visual changes and auditory sensitivities.

We also get seizures. POTs related seizures are common and horrible. I had a one off the other night – thank God it was a one off. Seemed to be because I was particularly shattered. Not infection related this time. And that’s another problem – we don’t get seizures for one reason, we get them for a load and doctors like to call them “idiopathic” meaning they don’t know what causes them. They don’t respond to anticonvulsants unfortunately, so we are left with no treatment.

Dysautonomia ranges from mild through to severe where people are mostly stuck in bed with NG tube for feeding and sometimes oxygen. On the nasty end dysauto can be fatal; respiratory failure, heart attack, stroke seem to be the lead CoD.

This is a reasonably good article on IST as part of Dysautonomia.

So what does getting aware mean? Well first of all – if you have someone in your life with this disease, say a prayer for them. Be patient with them when they are acting spaced, foggy, tired or just off. Don’t assume that someone who is trying their best to be as normal as possible can keep that up every day. Crash days, weeks and even months happen. Be kind.

If you have money and know a good charity or research thingy then please do donate. We need research if we are ever to get good treatment, let alone a cure.

It’s not the anger, it’s the guilt.

DownloadSomeone I was in a short email correspondence with said that if it should happen that he became seriously ill, he would be very angry. I have to say, I doubt it. I don’t claim to know the inner emotional workings of the man who wrote this, but I do know how chronic illness works, and believe me, anger is a very tiring emotion and therefore not one that is tenable, for long periods of time. I’m not saying I’ve never felt angry or seen anger expressed by fellow Chronics – I have. Those of us who have rubbish or even abusive meetings with doctors will express justifiable anger; and sadly that happens far too often. But that’s just for those times.

The feeling or sense that bugs me much more of the time is guilt. I don’t know how ubiquitous this feeling is among us chronics, but it’s fairly constant with me, and as I think I’m pretty common, I am guessing there are others out there who struggle with it. I am not going to go into all the reasons I feel guilty, nor will I explain those awful moments when it comes to a head and I become a gibbering wreck. You don’t need to read about that.

This is not Catholic guilt. Wish it was – ‘cuz Confession cures that :lol:

No, this guilt is about all the things I used to do that I can’t do. Some of it isn’t just guilt it’s a kind of jealousy of others which in turn leads to guilt; not just about what they can do I can’t, but guilt over the jealousy as well as guilt over not being able to do stuff. Quite a complicated mess for a brain-fogger to handle. Tiring mess at times too, leaving little left for something like anger.

So, how to deal with it.

First – a reality check. Sometimes things are bloomin’orrid and that’s life. So, accept reality. Don’t paint it worse than it is, and don’t run and hide from it. Get down with Fr Fran Fortuna’s Everybody Gotta Suffer and accept. This is easy to write and difficult to do, but it is, honestly, worth the effort.

Second; don’t assume that other people are cross that you can’t do what you used to do. Projection is a bad coping mechanism and is more likely to make the picker-upperer (there’s a word that just needs to exist) of your lost ability more cross with you than the business of picking up where you left off.

I know that many people are not projecting – that their friends and even family do tell them they are lazy, need to try harder, pull themselves together. The most difficult thing here to to stick with reality and accept that they are the one with the bad attitude and it isn’t your fault.

Third: Don’t give up because of the silly guilt. There is some mechanism in false-guilt that leads to fear. So, the temptation is, to throw up your hands (or just one if the other one won’t coordinate) and cry “Forget it! I give up!”

Take the good days and enjoy them. I’ve had odd days when I can play the piano again and even cook a meal once in a while without burning something, leaving something raw, filling the kitchen with smoke or killing any of the kids.

Lastly but most importantly of all be grateful.

If you just threw something at the computer screen, take it back and think a minute. There are still good things in life, even with chronic illness. I’m not saying pretend things are better than they are – but just be glad for the things that are good.

If you have reached that awful point where you just can’t see anything good then look for something small – a flower in bloom, a slice of cake or even the smell of rain. Anything that holds something good in it.

Finally it’s worth remembering that for people with ME/cfs and some forms of Dysautonomia that emotions can get a bit weird. Mood is heavily influenced by things like how our adrenals work, serotonin uptake, how malnourished we have become because of a busted metabolism and the generally busted HPO axis. This, coupled with mood changing drugs such as steroids can have quite an effect on our coping skills.

All we can do is keep at it. One day at a time – and on bad days one hour at time.

PS. I think I mentioned in a post where I’d seen the Cardiologist that I had decided not to have the tests for hyperadrenergic POTS done because they are very complicated and need lots of time and very skilled people.  Jackie’s very informative post here gives you the info on the tests.

ENDNOTE: I may also have mentioned that I am now on 10 mg twice a day of Ivabradine and as the max dose is 7.5 mg twice a day I spent a long time in the hospital pharmacy with my son.  Well, first repeat prescription request has hit the wall as the pharmacist is having the heeby-jeebies over handing the stuff over. I had written clearly on the the request that this was the Consultant Cardio’s decision and had been okayed by the hospital pharmacy and I assume the letter is in my notes by now – but it looks like there’s still some sorting out to do. I only hope this isn’t going to be an issue every time I need a repeat.  No anger or guilt – just frustration!

Ivabradine for Inappropriate Sinus Tachycardia 7.5mg BD: 1 month on.

procoralanI’ve been on Ivabradine (aka Porcolaran) for three months now, but only on the full dose of 7.5mg twice a day for a month. So, what’s happening?

Most of the time my standing heart rate is below 115. Sometimes I get spiky days when it’s up to 120 but I haven’t seen anything more than about 120/122 even on bad days.

Resting HR hasn’t been as good. It’s still often around 95-100 but I have had some lovely 75-80 days.

Unfotunately, for some reason, my OI symptoms are worse. I am blacking out more often and simply can’t stay upright for much more than ten minutes at a time without presyncope, severe breathlessness, blood pooling and other nasties. I have no idea why this is so when my HR is coming down to more sensible levels.

My tremor is much worse when I’m upright too making me wonder about those standing dopamine levels I wish they’d check on. Gravity and I don’t get on very well.

My mid-afternoon crash is getting worse too, where I have to half lie down on the sofa because it’s hard to keep my head up. Not every afternoon, but more often than I used to.

I don’t know whether this is the Dysautonomia side of things or the ME side. My BP is still generally high. It’s a bit annoying that the one side effect of Ivabradine  I could do with -lowers BP – I am not getting!

It’s still early days and there’s more the Prof is going to do with me. Although the OI is worse I still think that as my HR is lower this is a good thing. Perhaps if I get the BP sorted out some of the OI will be sorted too.

If getting the drug cocktail right can at least halt the downward slide, I’ll be happy. I can’t take beta blockers so Ivabradine is it for the IST. The only other thing I can think of for OI might be L-dopa, but we’ll see.

Overall I think, so far so goodish.

READING: NB although many people with POTS or IST can take Ivabradine, it is not safe for patients who also have NMH (Neurally mediated hypotension)

Ivabradine; A Ray of Hope for IST

Ivabradine; Clinical Efficacy in IST

Ivabrdine in the treatment of OI - oh the irony when my OI is worse!

Radiofrequency Cath. Mod Ablation for IST. So far the studies I’ve read on ablation or IST show mixed results with more not working or making things worse than working. In my case I don’t expect to be offered ablation as my lungs are shot. anaesthetics don’t suit me. If your doc offers ablation think and read long and hard before accepting or refusing.

Getting some medical attention. Private or NHS….(and Bob Millar’s fight for Ampligen)

I probably blogged after I had phoned the hospital and came up with the likelihood that I would not be able to see the Cardiologist until May. I was gutted, as I really thought this time around there might be some treatment, or some help of some kind.

After doing my own research (something too many doctors still disapprove of, as though they are afraid of patients who know about their own bodies) I found out that I most likely have Postural Orthostatic Tachycardia Syndrome; POTS. I did a couple of poor man’s PoTS tests to check.  Sure enough from lying down to standing up my heart rate whops up by more than 30 beats per minute and hovers over 120. If I am busy doing stuff like cooking, housework etc it can rocket up to 130s and 140s. So not a very serious POTs case but bad enough to make me feel horrible. This coupled with unstable hypertension and sudden onset of tachy at night leaves the question is this hyperPOTS or a combo PoTs or even Inappropriate Sinus tachycardia (IST) with Orthostatic Intolerance.

I don’t really think I have IST. My sitting up resting HR is 100+ usually but lying down it’s never more than 88. If I lie down long enough I can get it to in the 70s. I don’t lie down much in the day though, so my “normal” HR is around 100 to 110.

POTS is a complicated disease set and wherever I went to seek info the same thing was said “Doctors don’t know about POTS” and “Even most cardiologists know nothing about POTS”…

So I went in search of a specialist. In the UK, as far as I can see there are NO specialists in hyperPOTs. The world leader in hyperPOTs research is Dr. Grubb in the USA. Even dr Julia Newton who is a leading researcher in POTS in this country doesn’t tend to have much to say about hyperPOTS. She deals with the more common forms of either POTS with no BP changes or POTS with Neurally Mediated Hypotension(NMH)

I have found a POTS specialist at the hospital near me. He doesn’t have a background in hyperPOTS but he knows more about POTS than any other cardio I’ve ever met. The last cardio I saw dismissed me out of hand, even after admitting there were changes on my ECG, just because I have fibromyalgia.

So, it’s been a right game trying to get tests, let alone treatment.

Well the troops are rallying. More than one person is offering me the chance to go privately.  I’ve just received money from two lovely friends and a family member is also offering to pay for me to see a cardio privately. I am so grateful for this help! I really want some answers, especially as hyperPots can be genetic, especially from mother to daughter. Not a nice thought at all!

Getting onto the hospital we find the POTS specialist doesn’t have a private practice!! Arrggh! He is spread so thin between University, NHS and some charity work that I can see why he might not need, or want, a private clinic.

With some badgering from dh, I’ve got an appt in March (much better than MAY – but leaves me worried I’ve shoved some other sick person further down the line).

So what is my plan of action?

I am going to request epinephrine and STANDING norepinephrine tests as well as standing dopamine test.

I also want them to check out baraflex failure.

I also want the various blood tests for Lupus. It’s shocking that I’ve never even been tested for Lupus despite the symptoms overlapping so much and having a child with autoimmune disease (type 1 diabetes) which should even tick the (stupid) NHS statistics box.

It’s very frustrating that so few cardiologists have any knowledge of POTS and the way it affects people. I am going to try and find out if there is a specialist who takes private patients.  It would be good if there were dysautonomia specialist clinics – I can dream!

However bad it’s been for me, and however scared I might be of ending up bed bound, I am one of the very lucky ones, because I have managed a life with this set of diseases. My heart goes out to Bob Millar who is on hunger strike for Ampligen to be approved. I have to admit, I am not one who favours this sort of action (too many memories of the days of innocent until proven Irish in the UK) but Mr Millar had been bedbound with ME and Ampligen had him up and about with a life to lead. He has relapsed badly and he so very much wants something in place in case his sons become ill. I can relate to that. Perhaps you, too, are uncomfortable with hunger strikes, but Mr. Millar is in a worse position than most of us, he had Ampligen and got his life and a lot of his health back – and now the rug has been pulled from under him.

Keep him and his family in your prayers.

getting a heart monitorg

Yesterday after delays caused by the snow my new heart monitor arrived. It’s a watch with a chest strap. I bought one of the cheaper ones thinking it would do. It doesn’t work. The watch doesn’t recognise the chest strap. So I am sending it back.

Now I wonder whether to try again and get one of the expensive ones. On the lists people tend to recommend the

ideally I would like a simple heart rate monitor that will monitor my heart rate all day and with an alarm so that if I go above a certain rate it tells me to stop it.

I had set my personal limit at 125 and was using the finger pulse and oxy to check. However I can’t wear it so I tend to have it there and check my heart rate once I start feeling rough. But this often means I don’t check until it’s up around 128 to 134ish. I would then sit down until it reduced to under 125 and then get on with whatever I was doing. This hasn’t been working. I am still crashing each day and feeling horrible quite often.

So the new plan was I would stop at 120 to see if keeping my HR under 120 would reduce symptoms. But for this I need a good reliable HR monitor so I can sit down or lie down as soon as my HR hits 120.

As I am not going to see the cardiologist any time soon, I thought I would try and do something to improve things myself. It’s a shot in the dark really but it seemed worth a try.

So. I need to rethink the monitor. If anyone can recommend one that’s reliable let me know.

free book on ME/Cfs/Cfids whatever you call it. I call it Hideous. And an unchivalrous knight.

There is a book that apparently ME/cfs folk think is very good and it’s going to be free next weekend  You can get it HERE in USA and HERE in the UK It’s also available on Amazon Library if you have a kindle and Prime membership.

759870E8D080C63EE0401BAC7101193D-c1I’ve not long got back from my chiropractic appointment. I know my GP doesn’t approve, but it really does help me. It’s not a long term solution for someone like me, but no one has pretended it is. However, just having those few days, sometimes up to two weeks where I am not so shaky and trembly; where I can stand up without tipping over, swaying; where my vision is clearer (not sure why that happens, but enjoy it while it’s there); Where the afternoon crash is not such a nosedive and the pain is less, down to 1 or 2 on the pain scale. It’s nice.

Today he gave me extra needles and he adjusts the treatment to how ill I am. I appreciate that a lot.

There are a lot of snake oil salesmen out there. More so thanks to the shocking lack of tests, treatment or basic care offered for ME/FM and dysautonomic patients on the NHS. I have come across many patients who have spent money they couldn’t afford or didn’t have trying to find some relief from all this and they are still very sick. I am fortunate that I have found some help with chiropractic treatments.

A petition was opened asking for the knighthood given to Simon Wessley to be removed. Wessley has done a great deal of work in the UK which has made sure patients are labelled with “false illness beliefs” and the “it’s all in yer ‘ead” attack most of us have faced. Thankfully the biomedical research is still happening in America, Australia and Denmark among other places. Lots of new answers are coming forward which explain why we are so sick, and there are some hopeful drugs out there. Amligen is still in play.

Wessley has demanded the petition be closed and so it has been. Those who set it up are hoping to find some free speech elsewhere. While I personally think the shutting down of a legitimate petition childish and rather nasty when you consider the lack of voice patients have, all is not lost. You can read some of the comments from the petition here.

I tend not to believe petitions do much good. We had a few going to support the intrinsic rights of families to home educate and the Labour Govt made it clear they couldn’t care less about rights or public opinion, unless it suited them. The same still goes or people like Wessley would be disciplined not rewarded.

Wessley’s GET made me much much sicker today than I would have been if I’d been given the Nancy Kilmas advice of bedrest. If I had rested in the beginning, as many patients who are in remission now did, I might be (though it isn’t certain of course) in remission. I read the research far too late.

So if you are reading this because you are newly ill or newly dx with one or more of these hideous diseases, don’t do what the doctors tell you until you have read the research and done so with great care. Some of the stuff is difficult to understand, but some of it is clear and straight forward.  There are some great people out there who understand the complicated stuff and are willing to explain it.

Take charge of the disease, don’t let it take charge of you; and sadly you will have to treat what doctors say with extreme caution.

Having PoTS makes me a modern girl after all.

tumblr_mgec2rM1rj1rzwmx5o1_500I tend to think I’m a bit old fashioned in many ways but having PoTs makes me modern it seems. It was identified by Schondorf and Low and named as POTS – Postural Orthostatic Tachycardia Syndrome in 1993, so not that long ago in medical history terms. I assume these gentlemen made the dx criteria of heartrate increase from lying down to standing of more than 30 beats per minute within 10 minutes of standing or hitting more than 120 beats per minute (for adults).

While many Potsies do have neurally mediated hypotension with this (NMH) where their blood pressure plummets with being upright, that is by no means the only Potsie flavour out there. Those of us with sudden hypertension or (like me) sudden massive BP spikes followed by equally massive falls are not as uncommon as might first appear.

Migraine; apparently this is a fairly common symptom with dysautonomias. I’ve had them one and off for years. As a child and teen they were utterly horrendous  and very difficult to control. I ended up on some long term meds for about three years until finally they seem to go away. Then I would have one now and then. I would have an aura sometimes and soon learned that if I took enough meds once the aura started I could get away with a bad headache, but if I waited for the full on pain- nothing much helped. My more recent migraines have been kinder in that I have always had an aura. Lucky me! For those of you who don’t know- or maybe have an aura and haven’t recognised it, mine is like this; I get black dots and a sort of grey purple fog in front of my eyes. This is sometimes followed with the tunnel vision thing with white worms (sort of worms). As the tunnel vision gets worse and the black dots get thicker on comes the pain. If I get some migreleve pink before the worms I’m usually ok. I think that kind of aura is fairly common. Some people get a metallic smell or taste as well. I rarely get that.

This time however I had no aura and I was floored. Amitrip has been a great help keeping migraines at bay, but if I get one I take two pink Migraleve four hourly leaving four hours between the last pink to taking the night time amitrip. Now, that’s what I do but be warned – this is important – Migraleve and amitrip are contraindicated. That is you are not supposed to take them together as it can have some serious side effects. PLEASE , if you are in the same boat as me, be cautious. Most of us with these ‘orrid diseases have some drug sensitivities and I don’t want to cause problems for people.

If my GP knew what I get up to when he isn’t looking…!

I am still waiting for the results of the 24hr ECG and a new appt with the Cardiologist. Sadly I think I’ll need to be well enough to fight for results and stuff. I was warned when they unwired me. Ah well. I’ll give it another week and see.

Check out DysautonomiaPrison for article updates

The “Why Me?” moment.

Please take a look at this excellent blog post at Lethargic Smiles on those moments when us chronics groan under the “why me?” dump.  She approaches it with good sense.

She also has a clear list of symptoms for those who might want to know why we get a bit cranky at times.

POTS, ME/cfs, Dysautonomia. FMS: My 24 hour ECG – did it show POTS? PS FDA meeting over Ampligen

On Thursday I went to the hospital to be wired for a 24 hour Echo Cardio Gram. The first thing they did was a short 12 lead ECG with me lying on the bed. This showed that I was tacky already – but I had just wheeled myself into the room. The reason I can’t use my shove-it wheelchair myself properly these days is how horribly tacky I get when i do.

24hourecg_-N0030866Then they put a three wire ECG monitor on me. This was stuck on in three places and I was to wear it until the same time Friday. Then I had to return to the hospital to have it removed.

The kindly Prof, has promised (bless his cotton socks) that he will do all he can to help me avoid the hideousness of a tilt table test.

I’ve come across more than one unfortunate POTsie who has been through the torture that no terrorist has been given, four times before getting a definitive dx.

So, to avoid this nauseating, black out and fainting inducing NHS-theme ride, I was to make sure I made myself as tacky as a brass

45311_284215781699656_1476221922_n

pineapple for the ECG. Thus the Prof instructed me. Thus I obeyed.

So I spent Thursday doing washing, cleaning the house, cooking and making things and being up and down as much as possible. I hit well over the 125s and even registered a 132 on my finger pulseometer. So I hope that was enough.

The dx of POTS is basically this. You must have had problems for more than 6 months. From a lying down to standing your pulse must go up by more than 30 beats per minute or be over 120 within ten minutes of being upright. Easy.

For those of us looking at a dx of either hyperadrenergic or combo POTS we will have a rise in blood pressure to go with it- like badly matching socks. More commonly in POTsies is hypotension, but some of us like to be different. In my case I get massive spikes in BP with the occasional sudden drop to just below normal. This means I never need to spend money on a theme park ride. My body provides the Apocalypse experience without me needing to stand in a queue or spend any money.

60018_545327948830483_1336223284_nAnyway, I hope my pushing my limits to crash means I will quickly get a dx and some treatment. I am realistic and know there is no cure, but at least for POTs in most of it’s lurid flavours there is some kind of treatment.

If having crashed out so badly I STILL can’t get dx pleased be warned the “brave cripple” will turn into a raging ranting maniac. My patience with the medical profession ran out a very long time ago.

THIS ARTICLE explains quite a bit.

Get the low down on Hyper POTs here. There’s an amazingly foggy-brain blowing thorough overview HERE

So presuming the tacky is clear enough that I get the dx of POTs then what kind of POTs do I have? Going by a number of symptoms; hypertension, out of control asthma and breathlessness, tremour, shakes and twitching and jerking.

bost body

Overview of my BP, Pulse (blue) and pulse pressure(purple). You can see how sometimes things are better than others. Another typical POTs thing,

I am hoping that as the Prof mentioned testing my “flight and fight” responses that the NHS do at least allow for epinephrine and norepinephrine tests. I doubt very much I’ll get standing dopamine tested or Mast Cell tests. Neither do I expect to be tested for the rarer forms of EDS even though there’s a chance that is playing some role here. Chances are his F&F response test might be slamming a book shut near me. That seems to be the level the NHS is at these days.

As more recent research shows Fibromyalgia overlaps so precisely with Hyper PoTs I assume I have hyper or combo (because of the sudden drops in BP and the occasional very low pulse pressure around 1o).  Like DysGirl I have fluctuating pulse presure. Sometimes normal, Sometimes too high (above 50) and sometimes too low (below 30).

And now all I have to do is wait. And very probably chase up the results and remind the NHS machine that I exist.

Please add an extra prayer or two for patients with CFS/ME as tomorrow there”s a hearing with the FDA (Federal Drug Administration in America) over  whether the drug Ampligen should be approved for the treatment of CFS. It’s looking like a rocky road ahead, which is nothing new for patients with this disease. The initial negative approach caused the shares of the drug to suddenly drop by 45% which only reminds us that patient need and care is not the priority ever.

However this conclusion from the FDA prelim review has also been released.

CONCLUSION from FDA prelim review
“In summary, CFS is a serious, life threatening and unmet medical need. There are currently no FDA approved products specifically for the treatment of CFS. Ampligen has the potential to be a positive therapeutic option for patients with CFS who do not have an alternative to directly treat the condition. Given the overwhelming physical and cognitive health issues; the decrease in activities of daily living and overall lack of quality of life associated with CFS, Ampligen clearly represents a clinically meaningful advance for a significant unmet medical need, and the weight of evidence supports FDA goals to advance treatment for chronically ill patients with severe debilitating, life threatening, conditions such as severe CFS.
It can be stated that the burden of the symptoms associated with CFS is greater than any risks associated with Ampligen, since a CFS sufferer’s life may be at risk for years of debilitation often followed by premature death.”

Please do pray. As things are there is very little treatment for this. Many people are bedbound, very debilitated and desperate. 

new website that looks good for Dysautonomias and their stuff.

splash_logoThere is a new website just opened for DYSAUTONOMIA SOS  with lots of information and personal stories. THEY ALSO HAVE A BLOG. I have been told there’s a section on hyperadrenergic POTS but I can’t find it. If you spot it – please let me know.

Meanwhile there’s this thorough article on Stop  POTS on hyperadrenergic POTS

Fibromyalgia/ME/POTs and OI with hypertension, seizures etc. and things that help coping.

Before term starts I just wanted to write a couple of how-to-cope posts with these diseases.

Living in the UK, my chances of any in depth tests and medical help are so low as to be vanishing. After facing lots of misinformation, dishonesty and bold face lies from medics the first coping strategy I recommend is READ THE RESEARCH.

Ignorance is not bliss and even though most doctors can’t stand patients who know anything about their own illness, you need to know because they don’t. Be warned; you must use your information with caution. First of all, there’s some astonishingly shoddy pieces of research out there, so be careful what you follow. I’m sorry to say, it’s a minefield out there. A lot of research is not aimed at trying to find answers that will help sick people, it’s …well, frankly it’s difficult to tell what some of it’s for at all.

I have found Phoenix Rising a useful place to get not only the research but some good analysis of it too. It’s not the only place for good research articles but it’s easy to find a lot on one place.

Let’s take a look at some of the symptoms and handling them.

PAIN.

For many, if not most of us with fibromyalgia and/or ME this is one of the worst symptoms and the most difficult to manage. For me at least it’s been worse than the fatigue and a massive contributing factor to fatigue. There are some good meds out there, but each person is different and there is a certain amount of trial and error. Many people with ME in particular have sensitivities to drugs so read the more unusual

I am using Amitriptyline. There’s now some evidence that this works better for those of us with Fibro based pain as it has a good effect on mast cell disorders and there’s some evidence that FM might be a mast cell disorder.

I also recommend gloves and splints used for arthritis. Even an elastic bandage has been useful for me.

Things like those microwave lavender bags can help with mild pain – but to be honest I don’t think many of us with FM/ME based pain get the mild sort.

Often the pain will dictate what you can do. I have a sort of routine for getting out of bed where I wait until I can get my feet on the floor and then slowly put weight on them, then push up through knees and so on. There’s no point me saying “take your time” as your body wont allow you to anything else.

Pain can be a terribly difficult thing to get on top of. Many of us have used a chiropractor and/or an osteopath. Sadly the NHS doesn’t offer good pain management.

A lot of people have dark glasses for eye pain – mine are transission lenses which while more expensive has saved me money on drugs!

Ear plugs help for sound sensitivity.

POTS/OI

This affects us in different ways. Most people with POTS and OI will have tachycardia and hypotension. But there’s a significant number of us whose blood pressure pumps the other way; hypertension.

My system for coping with this is I sit for a lot of activities. Now, it would be better tachycardia wise if I lay down – but it’s not so good for my breathing or practical with the children. If you can lie down to get your pulse to something nearer normal, then do it.

For standing stuff. I take my pulse as I feel it getting higher. Once it’s over 130 I sit down. If I leave it to reach 140-145 I get too nauseous and pre-synocope and that’s just unpleasant. I can usually sit for a few minutes and my pulse will drop to 120 and then I can carry on. Cooking takes longer and I have to do it earlier in the day – mid afternoon for me, to make sure I can actually do it.

You will probably find a best time of day too. For some it’s the morning and some even manage to cook at a normal evening time.

I cook less fussy to prepare food these days – oven baked or slow cooker.

Shower – choose a time of day you can cope. I think a chair or seat in shower is a good idea if you can get one. We haven’t reached that point yet. I do make sure I have been sat down a while first. So far this has worked.

SEIZURES

These are a fairly new symptom for me so I’m not up on all the coping strategies. However I am learning. First, listen to your body. I get an aura and other warning signs. When I had the first ones and had a paramedic called she warned me not to fight them as it makes them worse. I discovered yesterday that this is very true.

Mine are apparently caused by low grade fever and infection. (Hence I’m back on antibios and steroids). I haven’t quite worked out what to do yet, but I think the fact that I have good idea what causes them means I need to get all infections treated asap. In the past I would wait until the infection was really obvious. Can’t be doing that now.

I have another appt with the GP on Thursday and we’re going to discuss stuff. She doesn’t think Gaberpentin or Pregabalin would help as it’s not “epilepsy” it’s a seizure disorder caused by infection and fever. However a couple of folks from Phoenix have recommended an on hand dose of Klonopin. I will ask about it and let you know.

My daughter is complaining that the house is cold as I keep opening doors and windows so that I can’t get too hot! LOL.

This piece of research is all I’ve found on bactierial infection and seizures

Frankly if I’m going to have these diseases and a blog I may as well try and write something of some use. Hope it is of some use to someone sometime.