Hyper Pots = Hyper Me!?

[Guest maia]

Words to live by Sarah. I used to be exhausted constantly. Pots of coffee throughtout the day just to keep me going. Oddly when i was taking florinef, it seemed to reset something in me and even after i had to stop taking it, i still felt better throughout the day after I adjusted to not having it. Im still weak/tired but not as much as before though it may have to do with accupuncture too.

I went gluten free a while ago and it has helped immensely. Also, eating less carbs and no refined carbs has been a godsend. I dont take any supplements but started juicing veggies in the mornings when i can. That has helped give me more energy, and i still drink coffee. Now that i know my norepi tripples when standing, i think the trick is to feed the body with enough easily digestible things to keep up with the demands put on my body tht are caused by the stress of having so much norepi wreaking havoc on my system. I did take sublingual b vitamins and that helped while i was taking them. I think what i most helpful though is diet. Keeping to things that are easily digestible, avoiding anything that could be in the least bit aggrivating or difficult to digest and small meals. Oh, and i took digestive enzymes for a while too, that seemed to help also and i eat nothing with preservatives etc. I drive people nuts lately with my diet but basically, if it isnt killed and tossed in a pan, or dug from the ground, i dont eat it-except for the odd treat which we all need . Its definitely helped.

[SarahA33]

Thanks for all the diet info. I force myself to eat small meals and snack a few times a day because I lost a ton of weight due to fear of the stomach pain/issues. I just honestly have no appetite either.

Florinef has been a wonderful med for me also. Do your pressures run high on florinef?

So nice to hear that acupuncture has helped. I tried it only once. I receive chiropractic adjustments 2 times a week to see if that will help at all. I kind of sometimes feel like i'm trying to throw darts in the dark.

[Psalm 23]

Hi Sarah,

It took about 8 months to work up from 5 minutes to 30 minutes. I'm sorry to say that I still struggle with it in spite of it being a very slow flat surfaced walk. I have tried increasing the time to 45 minutes but the recovery time afterward is too long and I just feel awful. I tire very easily in general and require frequent rest periods between everything I do.Tachycardia is no longer an issue for me as I am on so many medications that restrain my heart rate.

That's wonderful that you were able to connect with Dr. Joyner and receive some exercise direction that has been so helpful for you. I would love any information you can share with me. That's very kind of you. I have been thinking getting a recumbent bike would be a good idea. Maybe that's what I need to move forward. My main problems with walking are shortness of breath, leg heaviness and things along that line. Dizziness is usually not a problem unless I am motionless. I do a lot of shifting back and forth if I get stuck standing for very long. I am sure I always appear to other as if I need to use the little girls room. Lol.

I can totally relate to your stair dilemma. Even though my tachycardia is restrained my heart still feels as if it is going to burst and the shortness of breath that goes with it is suffocating. I'm sorry you have to deal with stairs in your work situation. I wouldn't want to have to worry about being stuck in an elevator though either.

In regards to medications I am taking; Plaquenil 300 mg daily, Mestinon 60mg Tid, Clonidine 0.1mg Bid, Propranalol 5 mg Bid, Neurontin 600 mg Tid

Amazingly for me the medications and treatment that were initially recommended by Dr. Goodman were spot on and have proven to be very helpful. Some of the medications I had been on before were all wrong. My Cardiologist here knew just enough about POTS to diagnose me in 2006 but didn't prescribe anything useful and that just continued until my POTS symptoms really starting worsening and finally in 2011 it was recommended I see Dr. Goodman. I guess I was spared a lot of the medication trial and error that others like yourself have had to endure. I'm so sorry you had to go through that. I cant imagine how frustrating and scary that must be. Of course things could change for me over time. The other two possible medications to add to my list were Florinef and Midodrine but there was a concern over a resultant persistent hypertension so they remain on hold.

It sounds like you have been through such a lot of trauma in your young life. What scary things to be evaluated for. I'm thankful that great care is being exercised with you if a new medication is added.

Also wanted to add that I went gluten free about 3 months ago and have found it to be immensely helpful in terms of pain reduction and abdominal pain and bloating. If you skip to the end of my profile you will find the rest of my dietary guidelines and other helps. That's been my area of trial and error for years. I have been contemplating going completely plant based but have not quite gone there yet. I take 9 grams salt and 2.5 liters of fluid daily.

Thanks for your sharing Sarah and it is so nice to feel not alone in this as well.

Janet

[Guest maia]

I dont take any extra salt. I noticed that it started bothering me so i stopped taking any extra. I have also read that salt is not recommended for people with hyper pots. I dont know where i read it but here are a couple links. http://www.medscape.com/viewarticle/522421_4%C2'>

[Guest maia]

well that is weird. half my post didnt post. Here is one of the links. the second chart shows that pots is not effective in hyper pots according to dr grubb. http://circ.ahajournals.org/content/117/21/2814.full#TBL1189801%C2'>

[Guest maia]

omg! it wont post! ill try adding spaces in the link as that is where it seems to be stopping the post. remove 3 spaces after the //

[Guest maia]

ok, ill try pm'ing you my post as there is a lot more info that keeps getting deleted! mods??

edited to try adding the link again. its an article by grubb that says salt is recommended in everyone except hyper pots patients. add the http colon slash slash immediately before this: circ.ahajournals.org/content/117/21/2814.full#TBL1189801

[kayjay]

I'm going to disagree on the hyper pots- salt thing. High salt does not = high blood pressure. It's much more complex. I'm sure if you have certain kidney problems or edema you should check with your doctor about limiting salt. It's not a good idea for hyper pots people.

Mayo clinic checks urine sodium levels. I was told to drink no more than 50% plain water. V8 etc.It pretty common for us to be thirsty and drink a lot. Dehydration and low blood volume can be an issue for us as well. Sodium can help your body stay hydrated.

Not getting enough electrolytes can be dangerous.

[kayjay]

Additionally my son had high blood pressure due to a kidney issue. His nephrologist is top notch and told me that the idea that sodium raises blood pressure is generally not true. Even if it does raise it - we are talking about 1 points or so. Not clinically significant.

I know that there are health conditions (ie. excessive water retention) that may be helped by reduced sodium. Not a good idea for us!

Sorry I posted twice, but this scared me. I don't want someone assuming that they should cut out salt. High salt lowers improves my hr and Bp- Im a "very" hyper- potsy who spikes high blood pressures.

[Guest maia]

hi kayjay, just to clarify, i wasnt saying that people shouldnt eat salt or that they should cut it out of their diets. just that salt loading is not recommended for hyperpots people by dr grubb. I dont know the reasons and never looked into it further after reading that because even though i was told to eat grams and grams of it daily, it did not make me feel good, and i have huge norepi swings-and i salt my food-i just dont salt load like i was told to.

[kayjay]

I completely understand that you should do what is best for you. I'm not a patient of dr Grubb's - so I wouldn't follow his recommendations. My doctor's would disagree with him. I didn't want someone here to put themselves in danger. Low serum sodium will can be harmful for a normal person- many hyper pots would at least end up in the hospital.

I'm not sure that any other pots doctor would agree with Grubb. I can't pull up the article but I believe that it says what you are reporting. Very dangerous IMO. It's really easy to do a 24hr urine collection to check sodium levels. I'm a hyper salt loading pots patient.

Interestingly a few days ago I was reading about how in general low salt diets are dangerous for people's hearts. Of course salt loading doesn't mean "eat McDonalds".

[kayjay]

Maia- could you try to pm me the link also? I can't pull it up. I'm very curious how he conducted his research and how many subjects he used. Thank you!

[kayjay]

Ok- I pulled it up and it's actually not research. It must just be what he recommends for his patients. Mayo and Vandy suggestions are researched based.

Sorry again for the Hijack Sarah!

[corina]

http://circ.ahajournals.org/content/117/21/2814.full#TBL1189801

Here is the link Maia was talking about!

None of the moderators changed anything in your posts maia, so I'm not sure what happened.

[Guest maia]

thanks for posting it corina. I dont know what was going on. every time i hit post the message would post up to the point of the link. i wasnt sure if something was wrong or if i was doing something wrong. either way, thanks again for posting it.

[Psalm 23]

Hi all. I think the bottom line here is stressing the importance that each person follow what ever is recommended by his/her own doctor. The above referenced article though is from 2008 which seems not very current to me. Does Dr. Grubb still not recommend salt loading for hyperpots patients or has that changed ? From what I have read a more current line of thinking is that most hyperpots patients are hypovolemic and in need of salt/fluid loading. As Kayjay has pointed out testing can be done to determine volume status. I have very high NE and dopamine levels and a very labile blood pressure with highs of up to 200/110. Salt/fluid loading was recommended for me as well as other therapies by Mayo Neurologist. I have only one kidney and was diagnosed with CKD stage 3 two years ago but thankfully whatever was going on reversed itself. In any event I expressed concerns about salt/fluid loading with my Nephrologist and he did not have a problem with it. I really need my salt/ fluid and other therapies to function.

Janet

[SarahA33]

Kay You didn't hijack, thank u!

[SarahA33]

Everyone,

Regarding sodium intake w/ hyper pots, Thanks so much for sharing with me what works best for you individually. Honestly I have never met any fellow hyper pots patients before so I am taking in all of your experiences and information. I'm sure some of you can understand this part of the journey... since my pressures become so violatile, I was told by every cardiologist (all 7 of them!) that I saw to avoid sodium. So I did that for years. It wasn't until the pots diagnosis that my doctors told me to increase my sodium. It ended up helping. It may raise my blood pressure a few points but nothing major. The benefit of it outweighs the risks for me.

[Psalm 23]

Hi Sarah,

There was one other thing I wanted to make mention of in regards to my present exercise plan. The only way it works for me at all is to maintain the same morning routine of taking salt/fluids and medications and waiting for a while then doing my walk around the neighborhood. I do it early enough to avoid any heat because I am completely intolerant of heat and if I feel overheated at all that will cause extreme dizziness, nausea etc. I guess when I said I didn't have dizziness problems that is only in a very controlled setting. That would be one of the advantages of using a recumbent bike instead of walking out side since it would be indoors with temperature control available and also if you had a problem you would be in a safer environment.

Janet

[SarahA33]

Hi Janet!

Thanks for the med list! I am very curious about Mestinon.

I am currently on Florinef and Midodrine.

It sounds like you have been through a lot also. You sound so positive and grateful for the care you receive. That's so nice to hear. . . Im glad that Mayo has been able to help you. I will post the exercise rec's tomorrow morning for you

[SarahA33]

Hi Sarah,

There was one other thing I wanted to make mention of in regards to my present exercise plan. The only way it works for me at all is to maintain the same morning routine of taking salt/fluids and medications and waiting for a while then doing my walk around the neighborhood. I do it early enough to avoid any heat because I am completely intolerant of heat and if I feel overheated at all that will cause extreme dizziness, nausea etc. I guess when I said I didn't have dizziness problems that is only in a very controlled setting. That would be one of the advantages of using a recumbent bike instead of walking out side since it would be indoors with temperature control available and also if you had a problem you would be in a safer environment.

Janet

OMG! Heat is horrible for me also. I really cannot tolerate any type of heat/humidity. I half joke about moving to Alaska.. The sweating, feeling like I'm going to throw up, and the sensation of falling backward and losing my balance is such a scary feeling. It's about 85-90 usually here with high humidity... I stay in my central air at work and home and very infrequently travel outside during the day. I passed out at K-mart in June.. It's nice when it cools off at night.. I get everything done then!

That's interesting about the timing of your medications and exercise. I should see what happens if I followed the same routine every morning before work. Problem is that morning's are my worst time of the day... between 4-10a. My heart rate is at it's worst and migraines throb to my pulse. It's awful.. I feel it in my teeth, ears, fingers.

[SarahA33]

oops!

Janet, I forgot to mention that along with the midodrine and florinef, I take a clonidine with it. .02 and 2mg ativan

[Psalm 23]

Hi Sarah,

You're welcome. I prepared for the worst in terms of side effects from the Mestinon but amazingly there were none. The benefits for me have been restrained tachycardia, somewhat improved fatigue, improved thermoregulation and improved gastric motility. I think I am probably forgetting one. It was started at 30mg tid then increased to 60mg tid a week or two later. I just hope it continues to be effective for me as I have read other people post complaints about Mestinons loss of effectiveness over time for them.

Thanks so much for sharing your Florinef and Midodrine information and experiences. I have been very curious about those two medications. I will be discussing them at my next apt. It's nice to know that your florinef acne side effect was temporary. I'm a bit old to develop acne. Lol. I guess with the Midodrine you get used to goosebumps and numb hands. It's all about weighing out the pros and cons. I'm glad it didn't worsen your migraines. I cant imagine how dreadfully painful and debilitating those must be. Chronic headaches are one of the few problems I do not have.

This whole medication thing is still so weird to me in that for most of my life I have been so anti medication unless absolutely necessary. Now here I am embracing any medication out there that will improve my level of function. Lol. I guess I did go through some medication trial and error with my Rhematologist in trying to address pain issues.

Like many here I have had some negative experiences now in the distant past. I am all about moving beyond that though and am truly so thankful for the care I am presently receiving. You sound like a very positive and grateful person yourself Sarah.

Oh, just one question I wanted to ask. Do you use an abdominal binder or compression hose ? Whenever you feel up to posting the exercise info is great. I will really appreciate it but no rush. Thanks so much.

[SarahA33]

Janet,

Oops I forgot something else 160mg Propranolol

I hope that your doctor is open to you trying the florinef.. don't be surprised if your numbers initially spike. A lot has to do with the Aldosterone escape .. it will allow your kidneys to not deplete so much salt and then your pressures should stable after a couple of weeks. My diastolics are now higher because of the florinef but again, but it's a trade off because of the marked improvement. I never had any swelling or edema. Florinef can lower your potassium levels so I have mine checked monthly and haven't had to supplement with anything this far! Some doctors believe that dosing has to be broken up at various periods of the day to have a continuous effect

I can identify with you regarding the medication uses. I never even had to take a Tylenol before I got sick. It's certainly an adjustment to shift your thought process. I used to feel a sense of sadness when I would have to dispense my weekly doses into my containers but now I'm just grateful that there are med's out there to help me. For so long before I was diagnosed I thought nothing would ever work, so I am okay now with the fact that this is more than likely something I'll just have to do long term.

To answer your question, I do not have a compression binder. Compression socks though!

Okay.. so my exercise regiment is a bit quirky. The best thing I can do for my hr is the recumbent bike.. Slow paced walking was suggested, along with swimming and a rowing machine. I haven't tried swimming, but maybe Kayjay, you can share your progress with Janet about this? Just a thought! Also, the rowing machine made my heart rate fly with the movement of my arms. I have a difficult time raising my arms in general..it just made me feel worse. The thing is, I had to tailor it to fit my pots. I think an exercise plan designed for pots patients vs hyper pots patients has to altered to what works best for you. I ditched target heart rates. I also lift 5 lb weights. I try to keep up w/ this 3-4 days per wk.

[Psalm 23]

Hi Sarah,

Feeling overheated is the worst. How horrible to pass out in a Kmart. I hope you didn't hurt yourself. I haven't passed out in a long time. I'm wondering if because I have been developing POTS symptoms over the course of so many years that I have developed a stronger compensatory mechanism. I have enough of a fair warning system as symptoms build to sit before I pass out. Actually when I listed improved thermoregulation as a Mestinon benefit for me it was in regards to cold tolerance. That's one of the most ridiculous things about this condition is the narrow range of comfortable temperatures.

It doesn't sound as if my morning routine would be a very good fit for you especially factoring in preparing for work and what sounds like almost unbearable migraines.Yikes. I'm so sorry. That's awful there isn't something to alleviate your pain. I guess we all find a different exercise schedule that works for us though. Another trial and error thing.

Thanks for sharing the rest of your medication info with me. I wondered if you were on Clonidine and Propranalol as well. I cannot imagine life with out Clonidine. To not feel like I wanted to jump out of my skin all the time has been sooo nice. I was on 0.15mg bid but had side effect problems so I ended up back down to 0.1mg bid so the small propranalol dose was added. I'm going to write down your meds,dosages and schedule you follow. Tomorrow I have an apt. with my Cardiologist who I'm sure will not even consider Florinef but will push for a clonidine or propranalol increase. I will most likely end up in a holding pattern for a while because of a Mayo visit delay that is the result of my not changing insurance when I should have. I appreciate all your florinef info though as it will be helpful in future. How many grams of salt do you take a day ?

Like you I am really thankful to have medications that help but sad at the same time to realize that this is probably here to stay.

I wear an abdominal binder most all of the time. It helps immensely with general abdominal pooling and postprandial pooling which has been a huge issue for me for years. I really hate to take it off. Trying to eat even a small meal without my binder is horrible. I also wear compression leggings though not on a daily basis as I do the binder only because it has been made too difficult on the warmer days. I notice a huge difference in how much longer I can stand before I am overrun with POTS symptoms when I am wearing the leggings. I have no problems with foot or ankle edema so I can wear leggings instead of actual hose. I have developed such a severe problem with SFN symptoms in my feet I couldn't stand to have pressure on them anyway. Always having to think about how slowly you have to move does get annoying.

Thanks for all the exercise info. The last instructions I received were very basic. Nothing was even said about a target heart rate just length of exercise time. I'm not sure swimming would work for me. I have a pool but even in the heat of summer I can't tolerate the temperature differential. I chill really easily then pain sets in. It's better then it was but I still haven't even been able to step foot into my own pool in several years.

I have problems as well with difficulty in maintaining arms being in an upright position for very long. Must be a common POTS problem. Oh dear, this has gotten too long. Sorry.

Janet