sean82

I have low pregnenolobe levels just found on blood work. This beta blocker is crushing me with fatigue. I will ask them about the other drugs you mentioned

I have had high diastolic numbers recently close to 110. I am on beta blocker now and ut rocked my bp way down but trying to get thru side effects of the beta. I know at 110 on diastolic I feel bad blurry vision headache dizzy faint. All of the above.

ill keep you posted as I try to find a solution. I feel way more relaxed on the med and more comfortable just trying to get thru side effects

Yes but what holtorf is saying is that cfs and pots is secondary usually to something else. Like you said it could be hormones, infection, lyme, mold, allergies, autoimmune.

Thyroid function is important. Lyme is often missed because a negative on basic bloodwork does not mean you are negative. You need to work with a specialist like holtorf.

Also eating right can help reverse autoimmunity.

My experience with meds is that they just control symptoms they dont get at the cause.

I am currently working with Holtorf Medical group in California. They believe 80% of all cases are due to chronic lyme disease.

I cant stress enough that we all have to figure out what the cause is. Controlling symptoms is important while we look for answers.

Anybody here have any experience with treatment for lyme or co infections?

Yes for me mornings are the hardest. I typically feel better in the evenings like later from 7 pm on

So you got off beta? What are you all taking now?

I had a TTT done in 2012 and it was supposedly normal. Even though my heart rate shot up.

last year, in 2016 I had a TTT done by an autonomic specialist and I do have POTS and dysautonomia for sure. If you think you have POTS, I recommend buying a blood pressure /heart rate cuff for your wrist. Omiron is the brand I use and its usually $50 you can order online. Its pretty accurate so start taking readings and recording. If you give me your readings, I can help give you some direction.

Take readings resting, then after 3, 6 and 10 mins standing. If your heart rate goes up 30 or more beats a minute then you have POTS. Also look out for your b presdure bouncing around because in my experience that can make you feel poorly. If you do have issues, work with your doctor and show him. Depending on results perhaps he can recommend a beta blocker or other appropriate med.

getting a diagnosis is first step and easy part but finding right meds is hard. I am diagnosed but still not well. Also if you have a holistic doctor that will look to see whats causing your issues perhaps you can gey to root of problem.

you can message me personally if you have questions. Thanks

So after talking to doctor hes suggested a beta blocker to bring down BP. 

Ive been on a couple days but im dizzy and my fatigue is worse. Also, my legs feel weak. My sister is a pharmacist and says this can happen with beta blockers and it could take a couple weeks.

looking for input on other peoples experiences with the side effects?? Do they eventually subside? Dizziness just wants me to lay down so far from functional currently.

I have started on beta blocker but I am feeling exhausted on it. And I do agree that my body is just trying to get blood to my brain!! Im going to go low and slow on the beta blocker though. I hear it takes a couple weeks to adjust to it.

I do think im hyper POTS as I get anxiety and wired and tired feelings frequently.

Is anyone on beta blockers? How long till I level out and feel an ounce of normal?

sean

Hello all,

hope you are hanging in as this is not easy! I wanted to get some input about blood pressure in POTS. I understand pots is diagnosed with heart rate.

My heart rate seems to be controlled by the iva bradine but I cant help but notice that my BP jumps by 30 both systolic and diastolic when standing? 

Does anyone have any recommendations on what to do? I suspect that is what is making me feel so bad!!

specifically bp is 115/68 laying and 150/100 standing. 

thanks,

Sean

Ok all of this is very much appreciated. I will start loading salt into my diet!! And drinking more cocnut water..

How do I find out what my insulin situation is? I know some people with ME/CFS have diabetes insipidus. I suspect I have a metabolic/ endocrine issue. I can log but I dont know what to look for.

sean

I have not measured salt. Thats a good point! How do I track my salt and get it to the right amount??

thanks!!

Hello all,

I recently started eating like a champ. I am eating lean protein, fruits and veggies, hydrating with Pedialyte and coconut water and I am still way lightheaded and feel tightness in my chest. I take Ivabradine to control HR but what can I do to alleviate the orthostatic intolerance? Adderall I can not tolerate and I am looking for an answer.

I saw Dr. Barboi in Glenview but maybe I should go back? I really need to address the lightheaded almost faint feeling? Any doctor or suggestions are helpful.

Thanks,

Sean

Hello everyone,

Hope this post finds you better than before. I myself am still very fatigued and experiencing the fun orthostatic/lightheaded/dizziness issues. 

I did see Alexandru Barboi here in Glenview, IL. He is a knowledgeable guy and did confirm my POTS. However, it seems his only answers were to slow the heart rate using beta blockers and then use a stimulant like midrodrine to help with lightheaded feelings. I tried the beta blocker and felt worse so I switched to corlanor (calcium channel blocker I believe) and that has slowed my heart down but Im still exhausted, weak and lightheaded. I have not yet tried a stimulant.

How has midrodrine worked for everyone and has it helped the orthostatic intolerance - the lightheaded weak feeling? Also, what doctors do you all recommend seeing for POTS/CFS. I would appreciate any good recommendations and also insight on the stimulant class and how it works for this illness.

Keep fighting & we are all in this together,

Sean

Ares 22,

What doctor are you working with for the IVIG treatments?? I would maybe like to see them as my treatment has been ineffective on corlanor.

Hello everyone,

I am on Ivabradine 5 mg in the morning and I am still experiencing POTS with heart rate going up 50 beats per minute when standing. I am also still very fatigued. I am going back to the drawing board with Dr. Barboi and adjusting meds. The best thing I have done so far is bought a heart rate/blood pressure wrist cuff to track my heart rate and blood pressure.

He may increase dose or switch me to a different med. Propalol made me dizzy and more fatigued so I did not tolerate that well but it seemed to help more with the POTS.

Happy Summer 2016 on the POTS med merry-go-round! I will keep you all updated and abreast of what my outcome is. Also going to start working with a functional med doctor to re-build that way as well because I have POTS and CFS to deal with.

Stay strong!

Sean

So after being diagnosed with POTS last week, I have been put on a small dose (2.5 mg) of Bisoprolol. I feel like my orthostatic intolerance is slightly better because my heart has slowed down.

However, I am more dizzy than before like im on a boat that is really rocking and I feel more spaced out and foggy. Also, the drug has done nothing to help fatigue and can't tell if my fatigue is slightly better or worse because I just feel different than before.

My question is would it be beneficial to hop ship now n trial another drug or should I stick with it. So far, I am not feeling better. Doctor Barboi near Chicago was a very good doctor and he of course says it might take a few trials to find something that hopefully works. 

Any insight would be appreciated because I have never been on any pharmaceuticals and anytime I have it feels like I have a very low tolerance..Thanks and I will try to be patient but I am working from home and need to get back to work. I was pushing myself before but I am done with that.

Thanks,

Sean

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..

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??

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.

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?

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.

I am just curious if anyone here has been diagnosed with orthostatic intolerance even with pretty normal blood pressure readings while sitting, standing etc. I have the symptoms of orthostatic intolerance but when I take my blood pressure it is pretty normal. On tilt test I took a while back, my BP did go up when I was tilte. It went up to 140 something (systolic) and 90 something (diastolic). However, after a good 25 minutes or so my BP had fallen to 114 over 70 something. I also have all the signs and symptoms of dysautonomia. My heart does not seem to race. I am waiting to see specialists, but if I have one more regular doctor do a poor mans tilt test and say Im normal Ill just fake it and pass out haha

But really I am lightheaded within a few minutes of standing. I also have excessive fatigue. Is this just a delayed orthostatic hypotension? My normal BP is 120 or so over 80 when sitting. So when I stood it went up 20 and then dropped 30 but was not evident for a period of time. Hmm any thoughts?? 

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.