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.

I’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.

I 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.

Then 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

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.

Anyway, 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.

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.

There 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.