New to the FORUM- not new to Dysautonomia

[sean82]

Hello everyone,

I have been ill with dysautonomia like symptoms since 2011. In that span of time, I was diagnosed with CFS and orthostatic intolerance. I do not think I have POTS as my heart does not race when I stand up but I do feel very lightheaded and exhausted when standing, and my primary thinks its orthostatic intolerance. How is this different from POTS as far as treatment goes?

Since I have been able to find this site, I have booked appointments with a couple of dysautonomia specialists - specifically Dr Chemali in Virginia and Dr. Balboi here where I live in Chicago. However, I can not get in until August/September. I have increased salt intake to 5-7g per day and I am on a strict diet of vegetables, animal protein and healthy fats. I was an All-American college football player (small school) and woke up one day and was dizzy in 2011 and my life has never been the same.

So my questions are:

1) How do I decipher if I need to see a CFS specialist or a dysautonomia specialist because I fall into both categories really?

2) What are some home remedies/supplements etc that I can implement in addition to the increased salt and strict diet regimen?

3) This site seems to mostly deal with POTS but I have orthostatic intolerance or orthostatic hypotension and my BP gradually falls as Im standing or upright? What is the outlook for OI and does treating the OI resolve the fatigue too or are they two distinct and separate issues?

 

Thank you,

Sean

PS. If anyone had insight please message me personally, I would be happy to chat.

[DizzyGirls]

Hi Sean and welcome to the site!

Don't forget that with all that salt you need to hydrate.  My daughter drinks at least 2 liters of Smartwater (or housebrand) electrolyte water a day in addition to her other beverages (about 4 liters total).  Caffeine helps her, others, though, I know, it does not.  Might have to experiment with it.  It tends to help the blood vessels constrict more, in turn, helping her blood pump more efficiently.  In a rush today, but that might get you started.  It's so very important. 

[statesof]

Do you currently have a CFS specialist? Since you have already been diagnosed with CFS is might be worth going to an autonomic specialist to see if they believe you have POTS which would be diagnosed via tilt table test and your patient history. Have you already had a tilt table test before?

As far as things you can do in the mean time, are you able to do exercise at all? Doing the recumbent bike each day (if you can without a worsening of symptoms) has been recommended to try and retrain the autonomic nervous system. You can also wear compression stockings and see if they help your OI related symptoms. Or leg exercises, like doing leg lifting machines if you can, or just simple floor exercises for your legs.

I think it would be hard to say, but I believe your doctors hope that resolving the OI will have some beneficial impact on your fatigue.

 

[Katybug]

It's important to fluid load as you are salt loading. The salt alone won't to the trick. The salt is to encourage your body to hold on to more fluid so it can increase your blood volume, and therefore,  your blood pressure.

There are many members that have forms of dysautonomia other than POTS, although POTS seems the most common. But, there's lots of crossover with symptoms and treatments. Also, many POTS patients also have OI as well and so have to manage both. Hopefully,  you will find information you need.

I don't have CFS, but I do have several comorbid diagnoses with my POTS. I find that I need specialists in each of my diagnoses to manage my healthcare. While the diagnoses have some crossover with each other, and so my doctors all know a little about them all, I find having the expertise in each diagnosis has been important. 

As for the question about fatigue, it's hard to say what thing is contributing most to your fatigue. But, my geneticist talks about the Rule of 5% in regards to treatment.  Her theory is if you can improve symptoms 5% at a time....5% with one thing, 15% with another, 10% with another....it eventually adds up to a significant improvement in your quality of life. So, the improvements you might gain from salt, fluids, exercise and compression might not be huge individually,  but, can really make an impact when used together.  Then, you may be able to add on with pharmaceuticals once you see the docs. I find this to be a good working theory. Sometimes I need braces for a joint, sometimes not, salt and fluid loading is important for me, sometimes I need compression, nursing a small amount of caffeine, exercise, sometimes I need to sleep a good part of the day, I have some as needed meds to take for certain things. 

[sean82]

Thank you everyone for your replies!

I have been fluid and salt loading for a couple weeks with minimal difference in symptoms. I also wear McDavid compression stockings and have been doing 2-3 minutes of exercise everyday as that is as much as I can tolerate. 

 I am seeing my Primary care doctor on Friday, he has recommended low dose Ritalin before (stimulant class as you all know). What are your thoughts on this drug for orthostatic intolerance? I know its all trial and error but do you think low dose stimulant and Florinef could help? I can't imagine waiting until August/September when I see the dysautonomia specialists for answers or to try some type of pharmacotherapy.

Also, I feel like my hands and feet are somewhat numb. Is this common?It just feels like they are half asleep most of the time. 

Any advice I can get before seeing him would be appreciated.

Sean

[Guest]

Hello Sean,

I'm currently waiting to be diagnosed, but have very strong POTS like symptoms.  There could be overlapping orthostatic intolerance too.  

Interesting enough, I was diagnosed with ADHD and put on Vyvanse 5 years ago (like Ritalin, but newer and slow release).  Vyvanse is the only reason I have a couple of usable hours each day.  From what I've read, it boosts circulation, which gives a bit of relief from symptoms.  I find it does this for a couple of hours.  As someone that has been on it for a while, I would highly recommend trying it if it's offered.  It can increase your heart rate, but I think you said heart rate isn't an issue for you? My heart rate runs way too high when standing...I went off Vyvanse for a few days and didn't notice much of a difference (if anything, Vyvanse makes it slightly better).  

I'm actually losing the ability to do "small" things with my hands (writing with a pen, washing silverware, cutting something small, etc.).  They've gotten really weak, and don't work that well anymore.  Then and my feet are always freezing. 

[dancer65]

Hi

I have vassodepressor syncope Cfs and POTS and struggle with low bp. I do all the usual recommendations mentioned above and was on florinef for 18 months, it took a while to get the dose right to get bp up but didn't alliviate any other symptoms so I just been changed to midodrine  on recommendation by my cardiologist, too soon to tell how its working out ! 

I have tingling, pain in my arms and hands. For the past  ten years I have noticed a slow decline in my ability to do intricate things with my hands for any length of time Some days I can't take my arms above my shoulders even if moving through a range of movement because of the pain it causes, others days it's ok. 

I have been reading a lot of research about the mitrochondia , ATP not working properly and that causes a build of Latic acid, that seems  to fit my symptons as I get the pain through my legs as well, the end result is that heavy feeling with the fatigue I can't move another step . Currently looking into adding more red meat into my diet for amino acids with other supplements, I feel anything is worth a try ! Fatigue is the sympton that bothers me most.

It is really hard waiting for appointments when you feel so ill , I hope in the meantime you find some relief in your symptons. 

 

 

 

[sean82]

Yes,

I do know that mitochondria could be part of the issue but at the end of the day this is all guess work and that is why there is frustration in all of this. 

My goals are to relive the lightheadedness and weakness with maybe a low dose stimulant and then attack the fatigue secondly.

As of right now, it is very hard for me to do anything as I feel so spaced out and lightheaded. Also, the weakness in my arms/legs/hands has become pronounced over the last few months which is a very annoying symptom. 

I just wish there was an easy answer but there is not one. We all have to be strong for our families and everyone else with dysautonomia. One day I hope to come out of the other side of this strong enough to help others. We can all only go one day at a time. I was a successful financial advisor and making good money fighting my illness day in and day out but as of now I am on leave from my own business which is very tough because that is how I make income.

I wonder what other ways I can make income as a person who may be house bound a good amount of the time? Any good ideas? Day trading is too risky haha. I would love to start a consulting business for those that are sick or ill and also recommend supplements to those people. I want to avoid living with my parents but that may be inevitable.

[Guest]

Have you ever considered starting a financial advice type blog?  It takes a while, and a lot of work, but they can be profitable over time (by putting affiliate links for companies/ products you trust into your posts, allowing advertisers to put ads on your pages, etc.).  A great niche blog market could be financial advice for people that are sick.  You could also create financial advice ebooks, organizers, etc. to sell online, if you are into writing.  You would have great credentials and experience to back your advice up.     

I'm in Canada, but a friend of mine works from home taking/processing calls for companies.  You apply to different job postings, and work the hours the company needs.  She has worked for pizza places processing orders, etc.  I believe customers call her over an internet phone line, and she types the information into her computer.  She can bid different contracts to work more or less hours, and the pay varies (some pay pretty decently, others are minimum wage).  

I know I have more ideas....hopefully I'll remember them tomorrow.  

[sean82]

GOOD NEWS!! Dr. Balboi the autonomic specialist had an appointment cancel and now has an opening tomorrow. I will report back with results on this doctor. I am excited to see him and see what light he can shed for me.

[headhunter]

Good luck and welcome....you mentioned arm and leg weakness, this has far far taken over my OI symptoms over the last year. Almost feels like more than POTS. Again good luck tommrow.

[sean82]

Thanks Head Hunter,

Yes I have a lot of numbness particularly in hands and feet. Also my lower forearms feel pretty weak and my chest tightness is crazy. Also have periods of feeling exhausted but extremely wired. Does anyone else get this?

[dancer65]

good luck today hope you get some answers

[sean82]

Thanks Dancer,

Barboi was a great doctor and says I have an autonomic nervous system disorder. He is sending me for tests and then giving me recommendations. He mentioned that my insomnia is due to my circadian rhythms being off. He says I would do better in Florida or Cali but he is going to help me restore that to the best of his ability.

I will report back when I know more.

[cmep37]

Really glad you've found some-one who's able to help you - hopefully things will start to improve for you now. 

[sean82]

OK so the verdict is that I have POTS and my heart rate goes from 70's while resting to the 130's while standing. I have been put on a very low dose Beta Blocker and my lightheadedness seems a bit better but fatigue is still through the roof. Does beta blocker make fatigue worse and how do I take care of the fatigue side??

Doc said the fatigue is more challenging??

[SarahA33]

Hi Sean, Welcome to the forums,

Great that your appointment went well with Dr. Barboi. Other members have had positive experiences, too.    For the fatigue issues, Provigil has been rx'ed for pots, etc.  Here is a recent thread on it - http://forums.dinet.org/index.php?/topic/27481-cognitive-dysfunction-in-pots/#comment-254746

Re: your question about BB's and fatigue, everyone is different, and I've seen a majority of member's and personally gone through a trial and error process with med's. I took a very high dose of propranolol for a long time and I really had no fatigue from it, however, Metoprolol, a different Beta,  was exhausted on and couldn't stand up. So, don't give up right away try to talk w/ your dr.  about how your feeling.   Which BB are you on?

Take care, Sarah

[Katybug]

I'm glad you were able to get a clear diagnosis!  

As Sarah mentioned,  we're all different when it comes to meds. I had the opposite experience from her....I had no side effects from metoprolol but was like a zombie on propanolol. As she said, if one gives you side effects, there are others to try.

Also,  I am way more fatigued when my heart rate is uncontrolled.  My cardiologist actually reminds me that it's normal to feel tired if your heart is in aerobics class all day long! You may get some relief from the fatigue after a few days of your heart not working so hard.

[sean82]

Thanks Sarah and Katy!

I am currently on Bisoprolol for a Beta Blocker. I have noticed I can tolerate standing much better but as far as the fatigue goes, I am still very fatigued. I know it is going to take time. However, the fatigue is disabling too so I will need to figure that piece out to become more functional.

I am starting to walk daily and I think I may have over done it yesterday. I walked twice for ten minutes because I could tolerate it better haha. It is really hard to tell if BB makes fatigue worse or it is still the same. One thing is for sure, it is not any better..

[Guest]

That's great news for you!  For me, Metaprolol does not make me more fatigued.  I tried Labetalol (another beta blocker) a couple of weeks ago though, and had a lot of trouble with it.  I would start falling asleep while sitting up 1/2 hour to an hour after taking it.  I also had really bad and muscle joint pain...so I'm back on Metaprolol.  

Vyvanse is the only thing that has helped me feel less fatigued.  Actually, that's not true.  I started wearing compression stockings a few days ago, and have noticed a difference.  Not a huge one, but I'll take any improvement I can get!  

[Sam1]

On 3/30/2016 at 10:11 AM, sean82 said:

Thank you everyone for your replies!

I have been fluid and salt loading for a couple weeks with minimal difference in symptoms. I also wear McDavid compression stockings and have been doing 2-3 minutes of exercise everyday as that is as much as I can tolerate. 

 I am seeing my Primary care doctor on Friday, he has recommended low dose Ritalin before (stimulant class as you all know). What are your thoughts on this drug for orthostatic intolerance? I know its all trial and error but do you think low dose stimulant and Florinef could help? I can't imagine waiting until August/September when I see the dysautonomia specialists for answers or to try some type of pharmacotherapy.

Also, I feel like my hands and feet are somewhat numb. Is this common?It just feels like they are half asleep most of the time. 

Any advice I can get before seeing him would be appreciated.

Sean

I reached out to one of the pharmacologists performing a study on provigil and a beta blocker on pots patients a few weeks ago and she said there were no studies that have been conducted on the use of stimulants like those on pots patients that she knew of.  They were currently working on the one, but there's no way to know what the findings will be or when it will be complete.

[Sam1]

On 4/22/2016 at 10:28 AM, Draven said:

That's great news for you!  For me, Metaprolol does not make me more fatigued.  I tried Labetalol (another beta blocker) a couple of weeks ago though, and had a lot of trouble with it.  I would start falling asleep while sitting up 1/2 hour to an hour after taking it.  I also had really bad and muscle joint pain...so I'm back on Metaprolol.  

Vyvanse is the only thing that has helped me feel less fatigued.  Actually, that's not true.  I started wearing compression stockings a few days ago, and have noticed a difference.  Not a huge one, but I'll take any improvement I can get!  

I had an issue with the metoprolol, they said it was contributing to PVC's, which triggered those wonderful downward spirals we all know too well.

[Lily]

You may have to play medication roulette for a while.  I felt great on Atenolol, but it made me depressed (no motivation, as opposed to sadness).  Now nobody will try any other beta blockers!  But there are other medications that could work, too.  Patience and good communication with your doctor will bear fruit eventually.

Exercise should help all symptoms, including fatigue, but it will take a while and take consistency.  

You could try compression hose.  It is annoying to have on, but it really helps minimize blood from pooling in my feet.  Also, stand as little as possible and put your feet up.  I work with my feet on my desk most of the time.

[Amalia01]

On ‎4‎/‎14‎/‎2016 at 0:56 PM, sean82 said:

Thanks Dancer,

Barboi was a great doctor and says I have an autonomic nervous system disorder. He is sending me for tests and then giving me recommendations. He mentioned that my insomnia is due to my circadian rhythms being off. He says I would do better in Florida or Cali but he is going to help me restore that to the best of his ability.

I will report back when I know more.

Sean,

If you don't mind my asking-what did your neuro recommend to correct this?

[RichGotsPots]

Hey Sean,

First off cool that you have a doc. While I appreciate all our Dysautonomia experts you still need to take all advice with a grain of salt. I think  part of even mainstream medicine is the placebo effect.  Your doc sound pretty good, but still take it will some salt.

I think bb are a great first line. From what I know Particially do to genetics and partially do to the variability of which area of your autonomic nervous system is most dysfunctional. BB though like most meds that low your HR will also lower you BP which is another reason for fatigue

I saw you are on ivabradine and I personally think that is the best one to start with.

My next sugggestion is seeing the top rheumatologist you can get into. chemali would be great too.   Eds, chairi, lyme, hormonal and a ton more not related to autoimmune. But there are many with different autoimmune illnesses who develop pots or other Dysautonomias..

message me if you have any specific questions..