POTS? Is it possible...: Like many Behcet's... - Behçet's UK

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POTS? Is it possible...

NerdyChristina profile image
NerdyChristina

Like many Behcet's patients I had a lot of specialists before I had a diagnosis, and more afterwards. One of these was a cardiologist. For years I had had issues with dizziness, sweating, and blood pressure spikes. After I began having palpitations, I was put through a cardiac echo and fitted with a holter monitor. After 72-hours without an attack, I was defeated. During that time the doctor has noted a few spikes in my heart rate. One scary episode involved an early morning jump from 60 to 160. I was told I had sinus tachycardia and that it wasn't serious. Prior issues with beta blockers had been dangerous because my blood pressure, which is usually high, had somehow plummeted.

Anyhow, during my last hospitalization I kept setting off alarms. I was hospitalized because I was having hyper active reflexes but couldn't control my legs. I legitimately couldn't walk for three days until they pumped me full of IV steroids. The alarms were going off because my heart rate was going as low as 38 at night. Then it would jump into the 90s if I sat up, and into the 120-140 range if I stood. During the day this happened and still happens, going from 60/70 to 120/130. I've also become afraid to exercise because of it.

An embarrassing issue is using the bathroom at night. I get so dizzy and sweaty from getting up and going to the bathroom that I honestly end up slumping to the cold floor and passing out or laying there until my heart stops hammering away. I'm asking my neurologist what he thinks next week, but it is frustrating. I'm doing Cytoxan infusions right now, and they're working on the Behcet's slowly. I just don't know if this is POTS and if it's related to the Behcet's, and what it means treatment wise.

11 Replies

Hi I was diagnosed with behcet's almost 2 years ago and on my last visit to my behcet's specialist I mentioned that my 15 year old daughter hasn't been diagnosed yet but gets the same symptoms as me and that I was under the impression that bd wasn't hereditary. My specialist said that they were seeing more and more people in families with symptoms of bd and are now doing studies to see if there is another condition which mimicks bd or if it can actually be inherited. But getting to the point which relates to your experience, my daughter also gets exactly the same symptoms as you too but to date there have been no abnormalities found with her heart or blood pressure. Frustratingly all tests for this come back normal and docs keep saying she has a type of migraine. My gp has just referred her to a neurologist so I hope we get some answers soon. I get the headaches but have always put the palpitations down to having too much caffeine and being overweight. I have had periodsome where I have stood after kneeling and everything has gone black but thought it was the rush of blood which had been caught in my calves whilst bent. The symptoms you mention and which my daughter has do fit with POTS but I'm wondering if it is inflammation in her veins and arteries which is restricting the blood flow which then spikes when the blood passes the inflamed areas. I hope you both get some answers soon. Thank you for highlighting your experience, it is certainly food for thought. Does anyone else out there have these issues? Is this another scary symptom of this terrible condition?

My neurologist is actually calling it autonomic neuropathy right now. We aren't treating it or exploring it until I finish the Cytoxan. I am still hyper reflexive which at least can't be faked haha, so they can't claim I'm being a hypochondriac. (For so long they said I was crazy until finally I got the Behcet's diagnosis.)

Did you ever get a diagnosis of Pots or dysautonomia ?

If so, did they say it relates to your BD or is a separate illness?

Did you have a tilt table or 48 hour blood pressure test?

If not, do you still suffer with the symptoms?

I am interested because in my last three flares I got these dizzy , palpatations, sweats and circulation symptoms, and they are continuing now , even when my flare up has subsided.

Please let me know , and I am sure other BD followers would like to know too.

Thanks

I haven’t been tested yet, but now that I have home nursing it’s easier to organize things. (I was always in the ER, now I can handle some of it with home nursing instead.) Anyhow, it looks like I’m going back to cardiology because of some seriously high heart rates and blood pressures. I’ve had lows of both as well, but high is the trend lately. There is some concern about my coronary vessels. (I have celiac artery stenosis that they suspect is Behcet’s related because of the odd pattern of occlusion.

I do have autonomic neuropathy and it suspected to be related to the Behcet’s l. I have really bad neurological episodes when I’m not controlling the Behcet’s well. My reflexes kick off, I can’t walk properly, my eyes dilate, and my heart either goes too fast or too slow. I’ve gotten as low as 39 and as high as 170. I have a neurology appointment Tuesday to talk about a few things, and I’m sure I’ll see cardiology in August. Additionally I do have gastroparesis that they think is related to both the celiac artery stenosis and the autonomic neuropathy.

Thank you for your quick response.

Would really be interested in finding out their conclusions, obviously you have other diagnosed illnesses that could be BD related or unfortunately separate from BD.

Your neuro symptoms , especially the PoTS, the eyes , reflexes and loss of ability to walk, balance ring bells with me.

Do you also get the tingling , burning skin and pain, numbness or throbbing in your esteemed?

Do your neuro symptoms get worse with more swollen pain and stiffness in the back of your head and skull?

Do you get a swimming head and palpatations, followed by sweats straight after you lie down to go to sleep?

Do you get dizzy in the shower and when you close your eyes to wash your hair, and then get sweats, dizziness and red, throbbing lower arms and legs when you get out?

Does your dizziness , palpation start suddenly if you change position or stop for a rest when you exercise?

Have also got memory loss, forget words, loss of concentration and slurred speech and balance during a flare?

Anybody else reading this have these symptoms ? What have you been told.

Yes to most all of what you listed. I have POTS secondary to Small Fiber Neuropathy and Autoimmune Autonomic Dysfunction.

Ovidia profile image
Ovidia in reply to VeronicaJoy

Wow, all of those are very familiar to me! Nice to not feel alone with all this happening all the time!

I've been diagnosed with Behcet's syndrome (neuro and gastric) , gasteoparisis, autonomic and peripheral neuropathies. Too much.

So many tests, but it's good to finally have some answers!

Thank you!

Milliepaw profile image
Milliepaw in reply to Blearyeyed

Oh my, you are saying things that I had no idea my symptoms were common to other BD sufferers. I have never seen a neurologist or a cardiologist. I have work to do right now. Thank you for your post

Legomum profile image
Legomum in reply to Milliepaw

Interesting to see these posts as I had similar tachycardia and dizzy spells when v unwell in 2015. I had been diagnosed with Behçet’s many years before. As I had ulcers and the fast heart rate and symptoms followed a flu-like illness, I was treated with high dose steroids.

I went around multiple specialities trying to find answers (cardiology, neurology, renal consultant, tests for POTs, look at adrenal gland, radiology looking for hidden tumours or PE blood clots in lung, etc).

It all eventually improved when Infliximab was started and the prednisolone dose reduced (was on 60mg daily!).

I was able to do a graded return to work and then back to my normal hours and lucky to resume my career.

Looking back I never had a definitive term or diagnosis for all the weirdness that went on, but know that it was truly awful and I would not wish it on anyone. At times it looked to others like anxiety (as my heart rate increased and I felt dizzy and would lie flat on the floor to heel better ) but life really had been great with nothing to worry about so it did not make sense. Later I have wondered if it was about my body being dependent on steroids (after years on a low dose 5mg prednisolone daily) and body and adrenal not coping with flu and needing adrenaline etc. I would love to have some answers to help others and avoid going through it again.

I am simply in shock reading your post! I feel like I am reading my symptoms through you! I have been diagnosed with Behcets and have experienced these symptoms for many years now. As I look up Autonomic Neuropathy it fits to a T. I have had tachycardia for many years, severe sweating, blood pressure problems, swallowing problems, and gastro problems, and none of my doctors or specialists have ever mentioned this. I was at mayo for over a year and was tested for swallowing issues, etc... I am extremely frustrated with going to internal med docs, Rheumatologists, neurologists, spinal docs, and I am only being treated for my sores and reducing the amount of flare ups I get because I get them like clock work... every single month like a period. I can mark them down on a calendar. I have also been diagnosed with fibromyalgia, Endometriosis, and severe migraines. But I live my life sweating in public, extremely embarrassed, and they always wonder why my resting heart rate is minimum in the 90’s to 100’s , yet they do nothing about it. I am so glad I found you and see that there are others like me out there. ;)

Milliepaw profile image
Milliepaw in reply to Lgunter

Exactly!!! Thank you I feel enlightened and feel like I can work with this better.

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