thegron

Hey all,

I still haven't been able to secure a proper diagnosis and honestly, I'm not even sure I have POTS anymore. It could be something else that is causing similar symptoms.

I saw my neuro (not a POTS specialist) recently and he referred me to an ENT to check for any inner ear disorders. The reason being, I described to him that I often partially lose my hearing (things get quieter) when I stand (and get orthostasis) and even when I'm sitting or lying down. Often I can change the position of my head and my hearing will come back. Anyone else experience this before?

Anyhow, certain inner ear disorders (e.g., Meniere's Disease) can cause dysautonomic symptoms so it is not a bad idea to get checked out even though I don't have vertigo. These ear disorders can also have a more direct effect on cerebral blood flow (explaining my constant brain fog).

If the ENT doesn't find anything, I may just pay out of pocket to get an fMRI or SPECT scan of my brain to look for regional cerebral hypoperfusion.

So I was just wondering if any of you had any comments on this.

Also, I was on rounds the other week and one of the other medical teams had a patient who had POTS. It was so classic... No one knew what the heck to do for her and everyone was clueless. I wanted to help but legally I couldn't speak to her because she wasn't my patient. It was just interesting to see first-hand what many of you go through when you get admitted to the hospital.

-Thegron

As the others have alluded to, melatonin can cause orthostatic hypotension in normal people. There is another drug (Rosarem) that is similar to melatonin. It should (in theory) be safer for POTS patients but I can't guarantee that.

Good luck.

Hey,

So I'm now thinking of getting a brain SPECT scan. Has anyone else gotten one before? If so, can you tell me a little about it and if you do not mind, the results too?

The reason why I want one is because my brain fog symptoms seem to be correlated with some mild chronic cerebral hypoperfusion (the brain isn't getting enough blood). I feel fairly confident that the scan will show something and it would be nice to have some evidence...

At this point, only one physician believes that I have this condition. He is a general doc at my school but is sort of a pseudoexpert on POTS because his wife has a SEVERE treatment-resistant case.

Thanks,

Thegron

I'd like to make a few random points. I'm a self-proclaimed expert when it comes to (mainly) drug-induced brain fog.

Take a look at the website below. It is a list of medications that have "anticholinergic" activity. Check for any drugs that you take and basically you want a score of less than 3. If you are taking a drug in the "1" section, it probably doesn't cause any brain fog. Drugs in the "2" and "3" sections have a higher potential to cause brain fog. Seriously try to stay away from drugs in the "3" section.

http://www.health.harvard.edu/newsletters/Harvard_Health_Letter/2009/November/anticholinergic-cognitive-burden-scale

I would recommend (if possible) that everyone (the entire human race lol) stay away from benzodiazepines (like atvian, klonopin, xanax). They are good for short-term use (less than 3 months) but otherwise, can cause long-term complications for some people. They most definitely cause brain fog acutely and also with long-term use. The brain fog is quite insidious and really creeps up on you. I speak from personal experience with these horrible drugs. If you are using them for anxiety and would like to know about some alternatives, PM me.

Feel free to PM me with questions or concerns.

That's the take-home message so I'm glad. haha

Haha it sounds like everyone else answered your questions Naomi.

But yeah to echo what they said.. the test is very unnatural. Who the heck goes around chugging pure glucose in a fasted state? The mixed-meal approach is much more natural.

What I meant by the false positive was that your glucose levels would in fact drop but that that wouldn't necessarily mean you have a disease or abnormality. I guess the term "false positive" is actually not a good one to use haha. Because technically, the test was a true positive because your glucose levels DID drop low. It is just a crappy test lol.

Regarding the delayed glucagon secretion... You're right that that isn't really "normal." But it is considered rather common and benign.

The OGTT is a notoriously bad test for diagnosing hyperinsulinemia or any kind of hypoglycemic condition. The fact is, some people will get false positives from the OGTT because idiopathic (and benign) postprandial (after eating) hypoglycemia is quite common. I speak from personal experience.

Also, sometimes the hypoglycemia isn't caused by hyperinsulinemia, but actually hypoglucagonemia. Glucagon is a hormone that increases blood sugar when it falls too low. If one has a delayed secretion of glucagon, they can get hypoglycemic. However, this usually only happens when one ingests a large load of pure glucose in a fasting state.

Bottom line: Take your results from an OGTT with a grain of salt (when looking for hypoglycemia).

Remember: I am a student, not a healthcare professional. Anything I say here is purely educational.

23

Thanks for the replies. Hyper POTS does not sound fun!

Hey thanks Naomi. I'll look into Dr. Weimer.

Hey y'all,

Those who have orthostatic HYPERtension: would you mind explaining to me what your symptoms and signs feel/look like?

Hey thanks for your support guys. Yeah it was pretty frustrating. Even my family and friends (with the exception of my brother) don't believe I'm sick. I hate these invisible diseases... At least i'm learning to be more self-reliant.

Hanice, thanks for your support. I think I'm going to see a different doc.

Sarah, I don't even remember commenting on one of your posts (thanks to my good ol' brain fog) but I am glad I did

Thank you for sharing your opinion on the exercise protocols. Since my issues are more mild, I wonder if I even need to follow Levine's protocol. I could just do my own thing and start slowly and build up my strength.

I think I'm going to cancel that appointment with Dr. Tullo and just try to see someone in NYC. Who do you see Sarah? Have you heard of Dr. Kauffman (spelling might be off)? I might make an appointment with him.

Kayjay, I definitely did not get this illness because of deconditioning but I think exercise will help me somewhat. I doubt it will be a cureall for me however. I did have an appointment to get an echocardiogram but I think I'm going to cancel it.

Hey so I went to see Dr. Tullo (in new jersey) today for the first time. He was a pretty nice guy but mostly did the talking. My dysautonomia is relatively mild compared to the people that he usually sees so I don't think he's even convinced that I am sick...

Anyhow, for the time being he is putting me on Dr. Levine's exercise protocol. I feel pretty confident that it will help with my orthostatic symptoms but has anyone's brain fog actually improved on it (or just exercise in general I guess) ?

I will see him again in 3 months and, if the exercise doesn't help, I will be more assertive and make sure he reads my symptom list.

Just in case anyone is curious, I'll paste my symptoms below.

I will put an asterisk next to symptoms that only appear when my condition is very bad (usually from excessive carb intake).

The intensity and number of symptoms is variable and really depends on my diet. My symptoms can include the following:

-Always present cognitive dysfunction (memory loss, slow processing speed)

-This is my worst and most constant symptom (has never gotten better)

-Orthostatic hypotension that usually lasts about 30 seconds (complete with auditory disturbances, weakness, tachycardia, light-headedness, and paresthesia)

-Sometimes I'll have dozens of episodes in a day (everytime I get up)

-Similar orthostatic symptoms lying down and sitting as well (when lying, raising my head helps)

-Sometimes after eating I can feel pressure in my head (it is hard to describe otherwise)

-Heart palpitations (hard to tell whether or not they are related to this condition)

-Generalized poor blood flow to my extremities (when standing, sitting, lying down, etc.)

-I’ll get lightheaded and bradycardic when engaged in an adrenaline rush

-I get fatigued and sleepy a lot earlier than usual

-Cravings for sweet foods (could be unrelated)

-A pulsatile sensation toward the top of my head (almost like the feeling of your pulse after a BP cuff is deflated)

*-Gastrointestinal upset

*-Severe malaise

*-I can get bad headaches that will last for days to weeks (no photophobia or phonophobia)

*-EXTREME light-headedness (accompanied by severe cognitive dysfunction) for days or weeks following a bad episode

-This light-headedness is far worse than the kind I experience briefly during an episode of orthostasis

-It is constant regardless of my physical positioning

*-Sharp pains toward the top of my skull (around the crest) when I bend over and I’ll get orthostasis

*-I can get severely depressed and/or anxious for seemingly no external reason at all

If it is sustained release then it really depends on what kind of SR it is. Some can be cut and some cannot. But if it is SR and is not scored then most likely it is not okay to cut it.

I am not a health professional and this is purely educational.

I have OCD and some kind of dysautonomia.

I added some options.

Last time I checked.. I'm a guy too! lol

Hey,

I have no idea if I did this correctly... if I didn't, I apologize.

Hey,

Sorry you're having eye issues. I know that florinef can (rarely) cause increased intraocular pressure and other eye problems. But don't take my word for it, as I am not a health professional. Ask your doctor for a funduscopic examination and to check the pressure in your eyes.

Feel better.

Welcome and good luck with pharmacy school and getting some help with your symptoms. I'm in Jersey also, but South near the shore. I don't have an autonomic specialist but my family doc gets it. I got better --- about 90-95% right now and very minimal symptoms since little flare in May. Don't give up and try to stay positive (which is difficult). Most of us POTs people are very driven individuals which seems to contribute a little for me. The less I could accomplish the more irritated, worried I became. Hang in there....and good luck

haha i like your screen name Relax86. It's something I find hard to do...

I'm so glad that you saw improvement. How long did it take to see this improvement? Do you think it was mainly due to medications or livestyle changes, or a combination? Also, did you have brain fog and did it go away?

Hi Thegron,

I'm also new to the forum and can relate so much to your story. My symptoms started my first year in college and have continued since. Working and going to school at the same time was difficult with the tachycardia, flushing, intense migraines, and the weirdest brain fog that I Still wish I could explain properly. The crazy high swings of my blood pressure actually followed about 3 years after that. It took 6 years for me to receive an accurate diagnosis, Hyper POTS. Much like you, my symptoms started out of the blue one day while I was at work. I remember that day so clearly, it changed the course of my life... which I'm sure everyone here can relate to. Unfortunately my brain fog was the last thing on my doctor's minds because of the severity of my other symptoms. Do you ever have memory loss or confusion? My dr.'s have always attributed it to my migraines. However, it happens in between migraine attacks.. Just curious if you can describe your fog a bit more.. My hope for you is that this doctor will be able to provide you with some helpful treatment options. Good Luck with everything.

Hey Sarah,

I admire you for working and going to school with this illness. You can definitely relate to what I'm going through. By the way, did you ever get tested for MCAD or anything like that? A lot of people say the flushing reaction is due to histamine secretion.

Fortunately for me, my brain fog is my worst symptom so I'm hoping my physician won't gloss over it. I'll make sure he knows that my main goal is getting rid of it. Yes I definitely definitely have memory loss. Confusion, not as much but sometimes. Not full blown confusion like I'm not sure where I am or who I am. More like, not recognizing words or people that I really really should. But I guess that's more memory loss anyway. Mostly my brain fog manifests itself as what I call the trifecta. 1) Memory loss, 2) Lack of concentration, 3) Slowed mental processing. The big three.

How are you doing now? Do you still have that awful brain fog?

Thanks, I hope I get better soon.

Thanks guys I appreciate it.

Golf, did you tell Dr. Tullo about your brain fog? It's the main reason I'm going to him and I don't want him to gloss over it like it's nothing. I am just hoping he can help me get rid of it...

Chaos,

Thanks. Yeah it's no cake walk :*(

All of this began suddenly after eating dinner one night last October. It started as a really really bad headache that lasted for days and then 3 or 4 days later, the cognitive issues and orthostatic intolerance came along (and the headaches slowly went away). Really strange...

No I didn't have any infection before it all went down. In fact, I got mono in December. That was rough because I vomited probably 50 or 60 times (every 3 or 4 minutes or hours) and ended up in the hospital for a few days. I was so dehydrated so my autonomic symptoms were very pronounced.

I suppose it's possible that this is a viral thing considering the fact that mono has a pretty long incubation period. Do you know how they would diagnose it? Which immuno labs would I need ordered?

Thanks!

Thanks Hanice. I will consider him.

Also, how do I post a poll? I clicked on "manage poll" and created it and hit finished, but now I'm unsure of how to proceed.

Thanks guys

Hey hey everyone!

I'm a 23 yr old male in pharmacy school and all of a sudden got hit with autonomic dysfunction 10 months ago. It's been a rough journey since then because, like most of you, I was shuttled from doc to doc and no one could figure out what was wrong with me. Of course, I got the all too popular diagnosis of anxiety. What's worse is that I am in fact an anxious person but that was nothing new...

Anyhow, armed with my own medical knowledge (thank god for it), I ended up diagnosing myself and having it unofficially confirmed by a doc who is a self-pronounced specialist. Now I have an appointment with Dr. Nicholas Tullo (in NJ) in a month. I've heard from many of you that he is a good doc.

Most of the posts that you will see from me will be about brain fog. This is because it is my worst and most chronic symptom. If you were to take out the brain fog, I actually don't have a very severe case of dysautonomia. My symptoms are restricted to my cardiovascular system (no GI issues, temperature regulation, etc.) and they're relatively mild (I'm not fully bedridden). BUT, the brain fog *****. It's VERY difficult going through pharmacy school with this level of cognitive impairment. AND I was planning on going to medical school afterward too.. so I REALLY need to figure this out.

That's all for my first post. You'll see more from me soon

It's nice to see that others are going through a similar thing as I