Foggy01

Still waiting on the doctor I went to to draw up a "diagnostic pathway" (series of autonomic tests) and the QSART maybe would be one of them. Dunno. No immune tests or anything will be done sadly as he's not an immunologist and I hear they're all very poor at doing immune related tests over here in the UK anyway.

What would you think if I were to tell you I've progressively been having sensation reduction (pleasure, pain, body position, temperature, etc.) across my body for years now, significantly worsening the last few months and especially the last few weeks (almost exponential in its increase in severity). It usually starts in an area and spreads spatially over a few days although sometimes the whole body can suddenly be affected at once. It is unrelenting and progressive since I was 14. It is not sensation loss (100% numbness, burning or tingling) so neurologists arent interested. I believe the ultimate cause is vascular as the sensation loss always correlates with vascular changes such as POTS or increased vasoconstriction and worsened blood flow (more and more body parts ever more frequently and easily going numb and/or cold and/or tingly, increased weakness and fatigue).

Diabetic neuropathy interests me as it is the only process that seems to be understood by doctors where blood flow affects nerve function and not the other way around (such as in the case of dysautonomia). Otherwise they seem highly unwillingly in general to contemplate pots and other blood flow disorders' effects on nervous function (such as central [brain fog] or peripheral in the case of sensation loss ["forgetting to breathe" that RichGotPOTS, mama_destiny and others report]). The vascular effects on nerve function (rather than the other effects glucose has) sound a lot like what I am experiencing.

I have been diagnosed with hyperadrenergic POTS and probably have low blood volume and seem to have terrible peripheral blood flow such as in the skin and limbs. If you want to know more about me then feel free to ask.

Im curious who I would go to about this. There seems to be no such thing as a vascular-ologist. Doctors understanding of vasculature seems to be just whatever intersects with their own little area. Like a connective tissue disorder doctor will understand raynauds but little else that can happen to vasculature. A neurologist will have a cursory understanding of how autonomic nerves effect vasculature. Cardiologists only seem to know about that which can cause a coronary. And so on. None seem to have any knowledge of vasculature in totality, and things like vasoconstrictive states (such as that caused by ang-II that Stewart et al. discovered) seem to be completely off the radar. (One neuro I was at threw Stewarts papers back at me saying it was irrelevant because it the measurements were only from the skin. He also implied Stewart's research just just exists to gobble up grant money. Based on a recent post I think you can make a guess which particular facility this was. He said he knew Stewart well so even those who are his "friend" dont seem to have a clue about his research.) Tentative things like NET transcription reduction due to a il6 cytokine causing the reduction of transcription factors like hand2 obviously sound like greek to them. So who in this world of marching morons does one go to that actually has even an understanding of vasculature let alone its potential effects on nerves. I dunno. Guess Im screwed.

I had that when I was pregnant. When I got IV fluids with potassium it helped a little bit. they never figured it out though. let us know if you can find a cause for it.

Probably excessive sympathetic vasoconstriction in my case or poor blood flow due to something else. Everything's going numb and cold recently and I have lots of sensation loss all over.

It's gotten to the point where if I eat ANYTHING it makes my stomach so bloated and sick feeling that I don't want to move. I have tried not eating anything for a day a couple of times but that makes me dizzy and I can't concentrate. Even drinking is a problem and makes me feel the same way. I lost about 15 pounds throughout the last month, which really isn't a bad thing because I gained weight on florinef. Not sure what to do. Does anyone have any ideas?

**** that sounds tough dilemma. Is there any sort of anti-nausea remedy you could take for now with food?

yeah my face is tingling all the time now. Tongue and lips too and throat. Feels strange like I have hairs in my mouth the whole time especially when I exert my muscles in my face at all like eating. Interesting feeling eating with a tingling tongue. Going to the same doctor as you btw allotmenteer. Wonder what he'll make of two people complaining of tingling faces in a row.

Forgetting how to breathe as mama_destiny described as well as just general sensation loss.

I was reading the ER report from when I went to the ER for fainting a while ago, and saw that my venous oxygen saturation was low, at 52%. The normal range is 88-94%.

Does anyone know what this means?? They never said anything about it to me in the ER. But I have had constant lightheadedness for 5 years, and wonder if this could be why? This is the only time I've ever had the blood test for venous oxygen saturation, so I don't know what my values usually are.

Thanks!

***... are you talking about SaO2? It's supposed to be over 95% to be normal I thought. And below 94% is strange and below 88~ is hypoxia I think. There's no way it could be 52% and you be still alive I would have thought... Why they didn't comment on it I don't know. They commented on mine when it was only 95% and said it was a bit low...

Dr Mathias at Queen's Square, my GP sent the referral letter, I haven't spoken to them myself?

Yeah ring up the secretary. She'll send you info and stuff by email and you can send back contact info and your own list of symptoms/history to her by email, on top of the referral letter by fax.

Good luck man, hope you finally get to the bottom of your lyme/dysautonomia issues.

Which neurologist is this? The secretary of mine gave me an appointment within 30 seconds, why are you having to wait a week for them to ring back? Maybe you're talking about a different one.

I had thought that but it seems that it may not be noted if you have a flat on your back type MRI these things seem to be better picked up vertical MRI plus many Dr.s do not believe for example a grade 1 herniation would cause issues.

I might look into this sort of thing if the EDS test comes back positive.

@anna: I think a lot of stuff like chiari malformation and neck issues would have been ruled out by all the spine and brain MRIs I've had. I might bring it up with my doctor if EDS ever gets diagnosed. I take it EDS can cause a lot of breathing problems?

@Richgotpots: Yeah the forgetting to breath thing is ****. Im not sure if its nerve damage though. Others have reported it being transitory for them which suggests it isnt nerve damage. Im at a loss as to how something vascular can cause such a thing though but perhaps hypoperfusion of some tissues in the chest somehow causes a numbness/loss of sensation. For you and I it seems to be a perstitent thing sadly. I wish it were just once in the blue moon like others report.

@anna: I dont display any hypermobile joints but I havent had the blood test for the other types of EDS yet. Well see what the result is.

To be honest guys, Im really at a loss as to what is going on in my case. I can only hope someone can figure it out. Pulmonary tests come back normal and I dont seem to have any autonomic neuropathies or EDS or mast cell dysfunction. Another forum member suggested that there perhaps is an autoimmune component behind my hyperpots and it is excessive vasoconstriction that is causing hypoperfusion and sensation loss. But I dunno. Im trying florinef now. I really dunno what else to try. Anyway.good luck.to everyone.

Im so sorry to hear about what he's going through. That sounds unbelievably scary but Im glad the doctors actually figured out what was wrong and that the shake is making him a bit better. God bless and good luck. I hope Vanderbilt can shed more light on these sort of problems soon. I never had heard of such a problem before and I thought Id heard a lot. God bless.

I hope your son is doing better. Forgive me if this is a bit off topic though but where can you have these tests done? Ive heard of catecholamines like norepinephrine and epinephrine being measured (although never had these done myself) but how does one get serotonin and dopamine measured? Is this standard cardiological practise? What disorders does it test for exactly? What does low serum levels mean for the cardiovascular syst exactly? I never really heard about anything like this before. All the best to your son.

God im sorry to hear youre going through such a scary thing. Please ask your doctor about this. I have had something similar although it hasnt gone as low. My supine bp is 100/70 now at 50-60 bpm while my standing is 115/77 at 80-90. They used to be 120/80 at 90 and 135/95 at 120 before. Theres been a big change and i feel like death and have very disturbing breathing issues. The doctors werent able to explain it for me but hopefully they can for you. Good luck.

It's not shortness of breath. It's something far rarer and virtually unknown. Everyone (even doctors) seem to mistake it for shortness of breath. One though seems to get what I'm talking about and suggested it's a nerve damage issue. I'm not sure what to think about that but at least she took me seriously.

So it's not shortness of breath, it's some strange nerve issue where sensation is gone. Makes you sort of "forget" to breathe since you no longer feel the impulses for breathing. What I have now leaves you feeling like you're suffocating all the time. Very bad.

Hey guys

For a few weeks there I had what a lot of you guys described, a sort of sensation where you'd forget to breathe. It was more a lack of sensation. There was no longer a breathing sensation feeling in the chest. I wrote about it here:

It got worse recently. Now I don't have the breathing sensation at all in the chest or diaphram or throat or sinus area. It feels like a constant suffocation feeling. It can get very bad if you're not distracted.

I really need some help in figuring out what might be causing this and what to do about it. I'll just tell you my story and I hope someone has some ideas.

So the doctors said I had no nerve issues and the POTS was just due to deconditioning. I had hyperadrenergic pots for like 5 years where my resting heartrate was 90 and on standing was 120. I had a brainfog and pallour and fatigue for a few years before I met the criteria for POTS, probably due to several deconditioning events over the years I think.

Anyway suddenly the hyperadrenergic POTS went away a few months ago. I've been feeling lightheaded with random aches and pains progressively. And stuff goes numb a lot or feels like a cold sensation. It's been progressively getting worse for the last few months. I'd also have my vision getting dimmer and dimmer and my mind started to get foggier and more "out of it". My heart rate can range from 60-90 at rest now but it's usually towards the 60 now. My standing is only 90-110 now and mostly towards 90.

Then suddenly a huge wave of weakness came over me 2 months ago and I got the "forgetting to breathe" thing permanently. I had it for a few weeks then I started to feel worse. My vision got dimmer again and I started to feel weaker. I had random tremors at night and had breathing difficulties randomly too. Then suddenly a few days ago I got a tremor and a terrible new weakness came over me and it feels like I'm suffocating all the time now. I don't have any breathing sensation in most of my respiratory tract now and it's **** to be honest.

I've been doing what the doctors said the last 2 months, an exercise program and added salt and water but it seems to be getting worse regardless. I tried to start the program back before this decline began but had to stop when the decline started.

I've decided to try florinef to expand blood volume. Blood volume getting lower is the only thing I can think of that can explain the worsening of symptoms. Another person on this forum had the similar "forgetting to breath" problem before and improved after expanding their blood volume. It's all I can think of to try and reverse this decline.

Does anyone have any other ideas as to what could be causing this? Why is my heartrate lower yet I'm feeling terribly worse?

I've probably forgotten a lot of details. I can answer questions if anyone feels they want to know more. I really hope there's a way to reverse these symptoms. Please help.

Well I'm still going through it, but here's my experience so far.

I believe I'm in the hyperadrenergic subtype, but I've never been formally diagnosed. My blood pressure usually elevates upon standing and it's in the normal - prehypertensive range, but has been known to go hypertensive in conditions of stress.

I started at .1 mg/d and that's the dose I'm on now. I load with about 2-3 glasses of salt water a day in addition to what I normally drink.

In the first few weeks I noticed some mild improvement, but that just might have been me thinking it.

Now well into my 5th week on this dose I'm noticing my lightheadedness significantly decrease, it's definitely not me just imagining it. I feel my headaches have decreased as well. Overall I'd say I've made a noticeable improvement.

I still would like to improve from this point, but right now my symptoms are considered mild. I'm thinking about just trying aerobic exercise to see if I can get that last bit of improvement rather than upping the dose.

If I were to increase the dosage from here, it would probably be to .15 mg and not the full .2 mg.

Jangle you seem to know a lot about POTS. I was wondering what you think about blood volume and POTS. Do you most people with POTS, even the hyperadrenergic variant, have low blood volume?

I'm wondering if I have it and if increasing volume could help me. Sadly there doesn't seem to be a way to test for this which is a pity. I guess I'll just have to ask my doctor if they think it'd be worth a shot.

Btw when you say your blood pressure was prehypertensive what range is this exactly? Also was that before or now?

Hey,

I really need to hear other peoples experiences with this drug.

What I'm interested in is:

Has anyone with the "hyperadrenergic POTS" subtype ever gone on it?

If so what was your BP at rest before and after and what dose did your doctor recommend?

Also for non-hyperadrenergic pots sufferers: What was your BP before and after going on it and what dose were you put on?

Also did your doctor advice you to take extra salt and water with it? If so how much?

And if you don't mind I was wondering when you started to see an improvement?

I'm having problems with lightheadedness, coldness, numbness, dim vision and weakness now and I don't really know what to do. I'm considering asking my doctor about this drug but I'd like to know other peoples experiences first. Thanks.

I had 24 hours where I never went above 40, they monitored me at the hospital but eventually released me. The irony was the release papers said to come back if I was below 50... I was 48 when they discharged me.

How bad did you feel during this episode? What did you feel exactly? I feel awful all the time now.

Instead of high heart rates, I have low rates with multiple rate drops per day - when my resting heart rate dropped and settled on 20-40, I had a pacemaker put in and now, my rate will only drop for a few seconds before the pacemaker kicks in and keeps me at a steady 72. I know that before I had the pacemaker, I was fatigued, washed out, and not able to stand up for long without becoming syncopal or pre-syncopal. I don't know what natural beta blocker you are taking but perhaps, it is contributing to your symptoms? It seems to me that if you used to have high heart rates and now you are having low heart rates, you need to see your physician or cardiologist and let them re-evaluate you. If you feel like death-on-a-cracker, you should at least try to figure out why and maybe even discover something that will perk you up! - Good luck - sorry you are having so many difficulties......

God that sounds awful needing a pacemaker. Glad you caught the problem and got a good solution for it. Sounded serious if it was going into the 20s.

Btw I just meant it feels like I'm on a natural beta blocker. I meant it's almost like I am taking a beta blocker but I'm not! It's really strange. But it seems others have this issue as well like "AllAboutPeace". The heartrate seems to go lower than it should for you to remain feeling normal. I feel worse with this low heartrate than I ever did with a high one.

Anyway thanks for the advice. I really should get reevaluated. Trouble is finding a doctor that might have some clue. Dunno who to turn to. I don't really have a doctor with any expertise anymore. The one I'm going to right now is really just following my lead. I've been reading the research (Levine's research) and leading the charge with my exercise regime. He's really just in the back seat. He probably would just say it's a normal heartrate and not recognise that it's actually making me feel worse than a high one. My family physician and my old doctor think it's a "good" sign that my heartrate is lower. They don't pay attention to feelings I guess. If only there were some objective number to show how worse I feel, then they'd see the low heartrate is not a blessing at all.

I have had the exact same thing and I've posted about it before too. It does feel like my SNS just gave up or possibly burned out. In terms of dealing with it, unfortunately I haven't really found anything that helps this.

What I can tell you is that my body did adapt to the new HR over time. So at first I felt horrible/like death with a high 50's HR, then I felt that way with a mid 50's HR, etc. Now I feel ok with a low 50's HR. It did become my new normal. Now it's the mid 40's HR that makes me feel awful. I haven't been back to my EP since I've noted this trend, so I do plan to discuss it with her. Her appts are really backed up.

My SNS was extremely overactive in the beginning as well, but now I usually only feel those surges when it wakes me from sleep.

It does feel awful and I can totally relate to your description! How is your BP?

We seem to have a lot in common you and I.

My BP doesn't seem to have changed with the new lower heartrate which is strange. It seems to change around a lot, sometimes it's 115/70 or 115/90 or 140/80. I dunno. I can't make sense of it.

The heartrate is really the only thing I can correlate with how I feel. It just suddenly started dropping in July from its previous highs of 90-120. It had been 90-120 for years and then suddenly this change. It's no coincidence I think that I started to feel a lot worse at the time. My body doesn't seem to have adjusted to it at all to be honest. I feel worse with each passing month. It's 60-90 now and I feel deathly. I dunno how I can go on like this. I'm glad you were able to get used to it. I'm finding it hard, especially because I keep feeling worse.

The doctors keep saying it's good that my heartrate is down now. :-P They don't seem to appreciate I feel worse than I ever did when it was up high. I've been doing an exercise programme for a few weeks but I doubt it has made my heart much stronger. It certainly hasn't made it so strong it needs to beat 30 times less than before! My SNS just doesn't seem to be compensating anymore. As you said, it's almost like it just burnt out.

Hey,

My standing and resting heartrates seem to have crashed recently. Resting has gone from 90 to 60 and standing from 120 to 90, but I don't feel any better. I feel a lot worse. It seems to be getting lower over time I think. I'm not sure. It's not just randomly some days, it's all the time now and seems to be a permanent change and trend.

I sort of made a similar thread before but I want to ask specifically if anyone has had this ever happen to them. I feel like I'm on a natural betablocker now and don't need any artificial ones. It's like my "sympathetic nervous system" or whatever its called has just decided to not bother compensating anymore and I'm left with fairly normal heartrates but feeling a LOT worse. I serious feel half dead. Even breathing is a struggle now. I have no idea what to do.

Can anyone say they've had a very similar experience or heard of one? I was hyperadrenergic before and now seem to be non-hyperadrenergic but I feel like death. Wish I could have the high heart rate again. I didn't feel so weak and fatigued with it.

I don't know much about autoimmune issues but is there any reason that lasering off part of the cornea would cause an autoimmune reaction? I never really thought about it before. Are you just concerned about the effects surgery in general could have on an autoimmune condition or is there a reason you think this specific surgery could be worse for it?

Half of me wants to cry, half of me wants to rejoice. what will I do with my free time now?

But on a serious note I was diagnosed yesterday after being testing for every single thing in the book. But I'm still worried because it was by a doctor who doesn't actually know a lot about pots patients and has only seen two prior to me in his 20 years of practice. Well, he didn't really diagnose the sub categories or anything but now I feel like I'm at square one. I feel like I have to change everything, even though I already have. But now I'm moving to Washington to search for more experienced doctors for my treatment, but I do know I will be getting something on the 7th as far as medicine wise. I need a beta blocker, anxiety, and who else knows. I'm not sure where this post is really going but I knew you would all understand.

But I do have some questions, has anyone seen any doctors on the west coast that are knowledgable or has grubb worked with anyone else's doctors? Any advice would be appreciated. Really anything at all, from diet, medications, doctors, or books. I would really appreciate it.

- Kala.

Hey Kala. You're one step closer now to getting better I hope now that you at least have comfirmation of what's wrong.

If you can afford it I'd recommend going to the Mayo. They're fairly thorough (not sure how they compare to other autonomic centres) and I was satisfied with them. I'm not too sure about the geography of the USA but I think the Mayo clinic in Arizona would be close to the west coast? Maybe you could try there.

They'll rule out things like neuropathies, autoimmune issues or deconditioning I think. They seemed very thorough in the minnesota one. Hope it's the same in Arizona.

Hope you can make the trip! Good luck!