New To Dinet

[thegron]

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

[Guest Hanice]

Ive been to about 10 docs in less than two years. Ive been dx with anxiety almost all those times. There is a lot to learn from reading posts in these forums. Im happy you found this website too! Nice to meet you!

[corina]

Hi Thegron, welcome to the forum! I can very much relate to your brain fog issues, I'm so sorry you have to deal with that, esp since you have so much planned! Good luck on your journey!

[looneymom]

Welcome to the forum. My son has problems with brain fog. He is not ADHD but has really responded well to Zoloft and Strattera. Both of these medications seem to help him stay focused. Glad you were able to find a doctor in your area. Hang in there and hopefully you'll have some answers soon.

[bebe127]

Welcome to the group Thegron!! Hope you find some answers soon

Be well.

[thegron]

Thanks guys

[Guest Hanice]

If I was in NJ I would go see DR. Michael E Rothman! Ive spoken to him on the phone and he is fantastic and he instantly knew I had pots by what i told him.. He is extremely skilled and on top of that he cares sooooo much. He's not a traditional type doc at all he asked me to call him back in a couple of weeks after trying a diet he recommended to me by the phone.
MD Wellness (Dr. Michael Rothman)
1 (732) 268-7663
210 Broad St, Red Bank, NJ 07701
http://goo.gl/maps/FK82x

This is his web page
http://mdwellnessmd.com/about-us/dr-michael-rothman/

Edited July 26, 2013 by corina

[thegron]

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.

[Chaos]

Welcome to the forum.

Can imagine how incredibly frustrating going thru pharmacy school must be with brain fog. I could barely function around my home many days with it and had to stop working, in part, due to it . Did your symptoms start after a viral infection by any chance? After having a lot of immune testing done, a specialist put me on high doses of anti-virals and my cognitive issues have been much better. It's believed that a certain percentage of us may have a viral cause for at least some of our symptoms.

People who respond to anti-virals seem to do better if they get treatment earlier, rather than later in their disease process. (i.e. within 5 years of getting sick, rather than after longer periods of time but the research on all this is still in it's infancy.)

[thegron]

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!

[Guest Hanice]

I would also love to know what tests can be done for this??

[gofl1]

I saw Dr. Tullo about a month ago, he was fantastic. He didn't want to change anything I am currently doing but he was extremely knowledgeable and his bedside manner was wonderful. I also had bad brain fog, felt like I was floating around in a cloud all day. High dose fish oil and b complex vitamins have been very helpful for me.

[kayjay]

I take provigil- I'm finding it very helpful. I take 1/2 a "normal" dose.

I'm sorry about the brain fog. I can totally relate.

[k&ajsmom]

Welcome! Ugh, brain fog. Yet to find a reasonable explanation or treatment. Sorry to hear your dealing with this. Good luck

[thegron]

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...

[Relax86]

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

[SarahA33]

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 symptoms. It took years for me to receive an accurate diagnosis, Hyper POTS. Much like you, my symptoms started out of the blue. Can you 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.

[thegron]

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.

[SarahA33]

TheGron,

Yes I have been tested for MCAD. The flushing episodes have somewhat gotten better since I discontinued use of Lebetalol at 2,400mg per day. As of today I still experience tachycardia, with a usual resting heart rate of about 110-120 but when standing will climb.. The migraines are still absolutely awful and I experience them almost on a continuous basis now. You describe such a similar fog... I have intense decreased cognitive ability at various times throughout the day. It has gotten so bad that I cannot remember periods of time that have gone by and frequently forget how to do simple repetitive, routine things, (ex: working with a system on my computer at work) almost as if I get stuck on a step and have to back-track from the very beginning. Bizarre.

Hang in there. I frequently have to remind myself that the only option is to keep pushing forward. I hope you have success with this doctor.

[corina]

Welcome to you to SarahA33!

[Relax86]

Brain fog wasn't one of my main symptoms. I was low BP and high HR. I was a fainter, and lightheaded and SOB. I don't remember brain fog being my issue...but it's telling that I don't remember that...lol

I am one who used hydrocortisone which is a controversial choice and sometimes not supported by medical professionals. I felt like some of my symptoms mirrored adrenal fatigue and I somewhat plotted my recovery on that philosophy. I was prescribed fludro early on which i didn't last more than 2 or 3 tries. I resisted Midrodine for months but finally tried that and that helped tons.

This flare started Jan 2012 and took a full year to see consistently better days. I have had some mini flares in 2013 but getting few and farther.

I had a bout of POTs in 2009 which was mild compared to 2012. The 2009 bout seemed to disappear on it's own. At that time I found DINET but in a few weeks time believed that I was fine and dysautonomia wasn't me. The 2012 flare pretty much put itself on the map so to speak

If I flare again I will not hesitate to go back to using HC and if my BP drops I will jump on Midrodine right away. In terms of meds I usually need the lowest dose possible and I sometimes split those. Hope this helped. Always remember, you can get better and also figure out lifestyle modifications to make life work with POTs. I still pay close attention to my body. But try to not ruin my healthy time with worry. Recent addition of meditation has brought me to a less intense place.

Good luck!!

[Chaos]

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!

I saw an immune specialist who decided which labs to run. In my case, he ran a full panel of labs looking at titer levels for various viruses and bacteria. He also ran immune subclass (IGG) panel labs and a Natural Killer Cell Function Assay test. Also basic labs like CMP and CBC.

In my case, my symptoms started after what was thought to be a minor post-op infection. But when my POTS symptoms (that we didn't know were POTS) didn't get better after a couple months, my PCP ran a mono spot and some other viral titers that came back really high. He assumed then that what they thought had been a post-op infection may actually have been mono....but I never had any mono symptoms and had no history of having had mono as far as I knew. When I saw the immune specialist, he said having a positive mono spot at age 47 was a "big red flag" that something was really wrong with my immune system and should have been looked at much earlier in my course of illness.

I had significant confusion when I first became ill and brain fog like you describe for the past 4 years...lack of concentration, slowed processing, having to go over things multiple times to try to figure out even basic tasks, having to ask the same question over and over because I couldn't remember if I had just asked it, word finding problems or word substitution issues etc etc. And having to perform tasks that required concentrating was exhausting. One of the most frustrating things was that I kept forgetting to mention the mental/cognitive issues when I'd see my doctor. And, I'd write things down so I wouldn't forget, but then would forget to look at my calendar, or lists or whatever I'd written down. Ugh! For someone who always had a great memory and was top of my class, it's been a major source of frustration. That's why I've been so relieved to see some progress in this area with the anti-virals. Even my daughter has said she "is happy to have her mom back" because I had changed so much and now I'm more like my old self.