potsdo

I saw ENT who thinks I'm having vestibular migraines. Has anyone tried Zonisamide for migraines?

On 12/13/2021 at 9:15 PM, CallieAndToby22 said:

Yea I hear you! I am exercise intolerant as well. When I got sick I was a competitive athlete and then I developed severe post exertional malaise. I think nortriptyline made me hungry all of the time as well, I just remember not being able to sleep I was so hungry and waking up in the middle of the night starving. I think Zyprexa is the worst in terms of weight gain but it's great for sleep! I take a small dose of Seroquel now but it doesn't work quite as well as the olanzapine. 

I’m going to stop the Elavil. I don’t think it really helped. I went to the ER yesterday with chest pain. Luckily the Coronary CTA was completely negative so I’m sure the pain is coming from the sympathetic surges. Interestingly, the medical provider I saw knew quite a bit about Dysautonomias. Her suggestion for me was Klonopin. I’m going to speak to my PCP about it. It’s funny how things happen for a reason and how people are placed in your life at the right time.

On 12/11/2021 at 11:05 AM, CallieAndToby22 said:

I took nortriptyline for years and it was very helpful for sleep and mood but haven't been on a tri-cyclic for some time. I'm starting to reconsider because amitriptyline is supposed to be really good for Interstitial cystitis / painful bladder syndrome but I just don't like the potential weight gain aspect of it. 

It made me hungry all the time. I gained weight on it. Exercise is supposed to help but, of course, what do you do when you're exercise intolerant?

As I started to recover from my first (2005) and second (2012) relapses, I started to go to the YMCA for their exercise classes for elderly patients. They looked at me funny and asked me why a young man (I was young once) was coming to these classes. It was just the right amount of rehab for my situation. Let me tell you, some of those older adults were running circles around "the young man." Lol!

On 11/8/2021 at 2:09 PM, cmep37 said:

I know exactly how you feel - to be honest I went for at least 10 years feeling like I never really slept.  I would fall into a light doze around 3am and jolt awake after 30-60 minutes and then be awake for another couple of hours before dozing off again for another 30-60 minutes and that would be it.  The thing that helped me is low-dose Trazodone.  I take 100mg which is less than the usual dose for depression.  It does help me if I take it early enough - I was told to take it at bedtime but that doesn't work for me, I need to take it around 6-7pm in order to get to sleep around midnight.  My rheumatologist suggested Amitriptyline or Doxepin but I wouldn't recommend them myself, they increased my resting HR and gave me a terrible dry mouth and eyes but my Mum and Granny both find Amitriptyline helpful for pain and sleep.  I still don't sleep brilliantly, I don't sleep that deeply and I do wake up a lot but I get at least 4 hours a night now and sometimes as much as 6 hours which makes a tremendous difference.

Amitriptyline does have some Norepinephrine re-uptake inhibition. So, in theory, you've got more NE circulating which could cause sympathetic surges/stimulation. Once I'm out of this relapse, I'm going to wean off the Elavil I'm on and see if that helps. It never helped me for sleep or migraines. It's supposed to block the parasympathetic side and used in conjunction with beta-blockers to block the sympathetic side. The only thing "working" for me right now to get a few hours of sleep is some low dose Ativan.

Happens to me. Sometimes it'll happen randomly several hours after eating. Frequent, small meals seems to help.

On 12/2/2021 at 7:50 AM, CallieAndToby22 said:

It's interesting to hear from a doctor who is also a patient, but I'm sorry you're suffering. I tried to get in with Dr. Trevino as well no luck. No help in the Panhandle is all I can say. And yes I have been trying dysautonomia meds for nearly 15 years with no luck, huge amount of side effects that outweigh any good. I had a trial of IVIG in the past for autoimmune encephalitis and it inadvertently helped the Dysautonomia but it was discontinued by insurance because of cost and now the best thing for me is saline IV infusions but the doctors here are very apprehensive about ordering them. Like you, I'm very frustrated and extremely tired. I used Naysa full spectrum CBD at first and that helped then it quit, then I found funky farms and it worked for a few months and quit, then I tried soul cbd and charlottes web and they didn't work along with many other random brands from local shops. My medical marijuana license is expired so I'm attempting to remedy that situation. My mom has been an RN for 30 years and advocates so much for me for which I'm so appreciative but to no avail. 

Medical marijuana does suppress the sympathetic nervous system. A physician friend of mine suggested I try it, but, in my line of work, I don’t want my name to show up somewhere on a list of mmj card holders. Is Dr. Thompson still practicing? I recall he was in the panhandle and was out of the office for a bit because he also has Dysautonomia. Not sure if he’s back to work.

On 11/30/2021 at 11:56 AM, CallieAndToby22 said:

I wake up at ungodly hours as well and it never feels like I've slept (totally non restorative). I've tried 2 other reputable CBD brands and it seems to be making things worse where-as 2 months ago it was knocking me out and giving me restorative sleep. The midrodine at tiny tiny dose had some benefits like helping to calm down adrenaline but after a few weeks I was having trouble urinating then this was greatly affecting my sleep and rest and I just had to quit taking it so I'm really bummed, I need some sort of vasoconstriction but the vasodilators are what help my bladder......... Have you found any helpful doctors in Tampa? I'm in North Florida and struggling, I also have many other health conditions and a very abnormal PET brain scan from years ago that has still not been explained. My friend is in the NIH undiagnosed disease program and she went to one place, one setting, and was seen by every possible specialist and they came together as a team to discuss her case, and it was found out she did not have ME but actually primary mitochondrial disease and other things as well as many genetic mutations; this seems to be the only program where doctors come together and discuss everything under the sun together but they only accept 9% of applicants and patients wait about a year to be accepted or seen. 

 

No good doctors in Tampa. The ones I've talked to all say - "This is uncharted territory." Which means they don't know anything about dysautonomia. There's a Dr. Trevino in Clearwater who supposedly treats dysautonomia patients. Unfortunately, he's so busy with his practice, he's not taking on any new patients. I tried the "I'm also a doctor" but his staff wouldn't budge. There's Mayo Clinic in Jax. That's where I went with my first relapse. They weren't great. I had already diagnosed myself and had done most of the diagnostic testing. Every doctor pretty much tells you to try various meds until you find a combo that works for you. Very frustrating. My best friend is a cardiologist at the Cleveland Clinic and has treated dysautonomia patients and he tells me the same thing I've heard for the last 20 years. What brands of CBD were you using that helped?

Sorry to hear about everyone's sleep difficulties. I'm in the same club unfortunately. I take 0.25 Ativan at night to take the edge off the adrenaline surges. I've been going to bed at 9pm, intermittently nodding off until 3-4am, and then tossing and turning until 6am at which point I just get up. I was just diagnosed with Type 2 diabetes so that's contributing to the sleep issues. It would be easier if I could nap the next day for a bit, but, the adrenaline surges don't let up if I try to nap. What a crazy illness!

On 7/15/2021 at 2:24 PM, Pistol said:

@MTRJ75 - that is why with dysautonomia it is recommended to eat frequent small "snacks" rather than actual meals. I follow this regimen and find that as ong as I keep something in my stomach all the time I have less hypoglycemia and less dysautonomia symptoms

1. Would you mind sharing what you eat and how often?

Thank you all for the input!

It’s been a while. For those who don’t know, I have POTS for almost 20 years. Now in my third major relapse which is complicated by new onset Type II diabetes. I’m trying to control it with diet. Exercise is out of the question right now due to the relapse. The issue is my blood sugar keeps tanking every 2 hours requiring constant glucose monitoring and eating almost every 1.5-2 hours. My endocrinologist has no real suggestions. Does anyone have any experience with this or perhaps a physician that does?

I definitely felt worse when I first started the new meds. I was on the old meds (SSRI, etc) for 8 months with no improvement and essentially bed-bound. I forced myself to walk and do light weights until I had enough strength to go see my parents in Pennsylvania (I live in Florida). My mother's cardiologist has a brother who's also a cardiologist who happens to specialize in dysautonomia. Coincidentally, he's the same Dr you saw. He actually wrote the interpretation and treatment protocols for the ANSAR test. He has an extensive database of patients he has treated successfully. I'm glad I saw him. It's been a difficult 16 months, however, his med regimen has definitely helped me to where I can go back to work.

I had all the usual ANS tests (Tilt-table, etc) and was on the usual meds (Florinef, Toprol, SSRI, etc). These were all peripherally-acting meds and de-stabilized my condition even more. Read the section on Paradoxic Parasympathetic Syndrome in the link. It may seem that all the symptoms are being caused on the sympathetic side when in actuality, it's the parasympathetic excess which causes an exaggerated sympathetic response. So the treatment is to suppress the parasympathic side which is done by using centrally-acting meds. If you're medication sensitive, you can start at the lowest possible dose and work your way up every few weeks. If you look at the data in the link, it says that autonomic balance can be restored in 12-18 months (if there is no permanent damage) and some people do get off the meds. I've had definite improvement, however, I've been down this road before and I suspect I'll need to be on some meds on a continuous basis. Only time will tell. Don't give up and don't be afraid to try new treatments/meds. The most important thing is to not let this illness control your life.

I had an ANSAR test and was prescribed the same medications as you were. I couldn't get the Midodrine as it was out of stock at the pharmacy, however, I did start taking the Coreg and Elavil (Amitriptyline). It took a good month before the meds started kicking in. That was a bad month - my ANS was completely out of whack. It's been 8 months and things are starting to stabilize. I would say keep up with the meds, but, don't expect miracles overnight. It's going to take some time. The meds you were prescribed are centrally-acting medications and work faster than peripherally-acting antidepressants.

Here's a link for more information than you'll ever need on the ANSAR test:

http://www.ans-hrv.com/interp_univmiami_fr.pdf

I just had an ANSAR test. It showed Paradoxic Parasympathetic Syndrome. The physician I saw is a cardiologist who specializes in Autonomic disorders. He's changing all of my medications because he said I need to be on centrally acting meds. Here's a link that explains ANSAR results:

http://www.ans-hrv.com/interp_univmiami_fr.pdf

Absolutely. I have the same symptoms including not being able to focus. At the beginning of a crash, I can't watch any TV or sit at the computer or even look at auto tail lights. It settles down when the flare subsides. One explanation that has been suggested is extra-ocular muscle fatigue.

I'm on it. I take 50 mg twice a day. Once a day doesn't work for me. I've been taking it for years without any issues. It's got my heart rate and blood pressure under control. Some days, however, when the adrenaline surges are pumping, nothing seems to help.

Two major relapses (in the middle of one right now) after being diagnosed with POTS. First one lasted 8 months. This one is 6 months so far. Had a few flares since 2003 (prior to diagnosis) which, in retrospect, were due to POTS.

Dr. Blitshteyn will do phone consults.

http://www.drblitshteyn.com/

There is a website somewhere that has a great list of what helped one POTS patient. Unfortunately, I can't find the link (must be the brain fog). Perhaps someone knows the link - the poster listed things that helped them like "forced themself to stay awake", "didn't give in to their body which was behaving like a tantruming child", "gradually exposed themself to stimuli". Obscure clues, but, maybe it will ring a bell with someone on this forum.

Brain fog, nausea, fatigue, sleep disturbance. I find the fatigue very debilitating.

That sure is a good deal! I'm going to have to get that next time I need strips! Docpots, do you have hypoglycemia or diabetes?

Neither. I start getting symptoms of hypoglycemia and POTS around a blood sugar of 90. I suspect it's because of the cerebral hypoperfusion disrupting the brain's auto regulation of glucose hunger. In other words, my brain senses the fall in blood sugar and the ANS over-reacts.

This is the one I use. It comes with 50 strips and the meter is disposable. A good deal at $20.

http://www.walmart.com/ip/All-in-One-Blood-Glucose-Testing-System/10818578