So Many Question!

[AubreyJane]

Howdy All!

This is my first post and I am so excited to meet others with this crazy disorder. I have erythromelalgia and POTS (and gerd and all those other POTS things) and was just recently diagnosed at UCLA. I've been reading over the forums to try to get some answers and I've learned so much more than the doctors could share with me. I still have a few questions though... I'll probably sound like a newbie, but I was hoping you guys might have some answers. Any response will be appreciated, I promise!

1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia?

2. Have any of you had recovery and relapses in POTS (I feel like I have)?

3. Without getting to personal, Do any of you take the birth control pill without any problems?

4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)?

5. Do any of your have problems with maintaining your blood sugar? Or, have your tachycardia exacerbated by eating to much sugar?

6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)?

I would appreciate any help and extra tips/info too!! Thank you so much guys

Aubrey Jane

[Notgivinup]

Hi, and welcome. I don't think for me at least getting a cold/virus has made me any worse.

Mine waxes and wanes, but no real recovery yet.

Not on bc.

I don't know anything about Ehlers-Danlos .

Coconut water is suppose to be very hydrating.

And one more thing I know for sure.....STRESS makes everything worse.

Hope this helps.

[iheartcats]

Welcome to the POTS world, AubreyJane (and welcome to a fellow Californian!).

1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia?

---Yes. I get more tachy from being rundown and the flu often makes dehydration worse and that causes me to be more tachy.

2. Have any of you had recovery and relapses in POTS (I feel like I have)?

---Some days are better than others...I had a couple good weeks a few months back and wish they'd return!

3. Without getting to personal, Do any of you take the birth control pill without any problems?

---We talk about quite a few personal things here...so no worries. I used to take the pill, but I stopped after 10+ years due to the increased risk of stroke. It was minimal in my opinion, but it was just time to go off them as I was on Midodrine and didn't want to risk more issues. I now have an IUD, Mirena, which I like.

4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)?

---Don't have this.

5. Do any of your have problems with maintaining your blood sugar? Or, have your tachycardia exacerbated by eating to much sugar?

---My blood sugar always tests OK, but I know I should avoid too much processed sugar and carbs. I'm working on that.

6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)?

I mostly drink G2. I need to look into something, too. I think I saw some drink packs at REI.

[kayjay]

Just wanted to answer 2 of your questions. I am on birth control. Make sure that you do not take YAZ or another that has a certain form of progesterone that acts as a diuretic.

YAZ gave me migraines and set of my most recent flare- happened in March and I am a little better but have not really recovered.

Take a mono-phasic birth control pill- Mayo told me this to keep hormone levels consistent. They put me on something and told me to throw away the last week of pill for 3 months so I sould only get my period a few times a year. The if you want to know the brand PM me and I'll go look- too lazy to go upstairs right now!

Also I am having great sucess with V8. I drink a big V8 before I get up in the AM followed my a huge glass of water with a nunn tablet in it.

I was drinking way too much plain water. Salty drinks have helped me. Good luck to you!

[Broken_Shell]

Howdy All!

This is my first post and I am so excited to meet others with this crazy disorder. I have erythromelalgia and POTS (and gerd and all those other POTS things) and was just recently diagnosed at UCLA. I've been reading over the forums to try to get some answers and I've learned so much more than the doctors could share with me. I still have a few questions though... I'll probably sound like a newbie, but I was hoping you guys might have some answers. Any response will be appreciated, I promise!

1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia?

2. Have any of you had recovery and relapses in POTS (I feel like I have)?

3. Without getting to personal, Do any of you take the birth control pill without any problems?

4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)?

5. Do any of your have problems with maintaining your blood sugar? Or, have your tachycardia exacerbated by eating to much sugar?

6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)?

I would appreciate any help and extra tips/info too!! Thank you so much guys

Aubrey Jane

Hi Aubrey,

Welcome to the forum! I all glad that you have found us. I am sorry to know that you are suffering with this condition, but I have that you will find advice and support here.

To answer a couple of your questions...

I don't ever have periods of recovery, but my symptoms do wax and wane. I have bad days and tolerable days. With me it is really more like parts of days - I live in 5 minute intervals.

I have been trying for over a year to find a hormone regimen that I can tolerate and that agrees wtih my body. I am unable to tolerate birth control pills and the Nuva Ring, so I have been trying with lower dose medications, but I have had nearly constant bleeding that goes on for months on these medications. I just started the most recent trial last night after three months of continuous bleeding that was getting worse rather than improving. I am 27 years old.

I have multiple episodes of hypoglycemia on a daily basis. They occur for no reason and cannot be controlled with my diet. I am unable to maintain my blood sugar to do any physical activity, including things like taking a shower. I have to go into the shower after I have had a snack so that I will not become hypoglycemic from the activity of showering. I have seen numerous endocrinoligsts and followed with one for years, but no one knows why I am like this, so the doctor has just said that it must be somehow related to the dysautonomia.

Again, well aboard! I look forward to seeing your posts.

~ Broken_Shell

[Elfie]

Hello,

To answer a few of your questions:

1. I do get significantly worse with a cold, the flu, or any sort of infection. I will generally have lower blood pressure and higher heart rate, even without dehydration. I will also pass out during these periods and a little cold is much more serious to me, with bad symptoms. I will also frequently get co-infections. I do not return to my usual POTs state until a week or more after the cold symptoms disappear. Therefore, I have a deep-seated desire to go ballistic at people who come to work sick (or at least highly contagious).

2. I have had several slightly better periods with my POTs. They were all periods where I was having low stress levels and was only working eight hours a day, five days a week compared to the fourteen hours I tend to work when I am in school. During these times I felt better and was able to be more physical and do more without feeling like I was dying.

3. I do take birth control. I have tried several multiphasic and monophasic pills and the nuva ring. However, I have only had success on one pill and had to go off for medical testing and then it stopped working. With all other pills (and without birth control) I bleed almost continuously. My pots symptoms are therefore worse when I am off birth control or when it is working poorly. My next step is to try the IUD Mirena, which makes me nervous because if my body doesn't react well, I am out $800 dollars.

4. When I was at the Mayo Clinic I was told I could not have EDS, because I was not flexible enough. However, I have always been very flexible but was quite muscled up and stiff from inactivity at the time. I have had one physical therapist tell me my joints are overly flexible but my muscles are constantly contracted and working to control the range of motion in the joint. As I have less muscle mass I have recently been popping joints in and out of place, which hasn't happened since I was a child, so I don't know if they overlooked something or not.

5. I have always had periods of hypoglycemia, but have recently noticed that my POTs symptoms get worse when I haven't eaten in a while, even if I am not hungry. However, this is not always consistent. Sugar doesn't appear to make my symptoms worse and it is frequently the only type of energy booster I can use if I need to study that does not give me headaches (although I can get tummy aches from it).

6. When I first got diagnosed I drank a ton of gatorade. However, now it makes me nauseous. To drink enough to make a difference in my symptoms makes my stomach upset. This also happens with other salty things. It seems as though my stomach doesn't tolerate salt well, which may be why I never used salt much prior to POTS. Instead I have found a packet made by the same brand and Emergen-C that is for athletes. I buy mine at the health food store. It can be mixed with any liquid and is better than gatorade and doesn't have sugar or artificial sweetener. I would highly recommended against G2 or anything with artificial sweeteners as there are some studies that link their use to neurological problems, as sweeteners like aspartame turn into formaldehyde in the body and some of the others can effect the gi tract.

[janiedelite]

Hi Aubrey Jane,

I also have POTS and erythromelalgia. Here's my answers to your questions:

1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia?Yes. It makes the orthostatic intolerance and tachycardia worse.

2. Have any of you had recovery and relapses in POTS (I feel like I have)?Yes. But I always have some degree of symptoms. However, I have flare-ups that last from hours to weeks.

3. Without getting to personal, Do any of you take the birth control pill without any problems?I used Nuvaring for a year or so. Any pills made me more nauseated

4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)?I don't have EDS. Small fiber neuropathy caused my POTS.

5. Do any of your have problems with maintaining your blood sugar? Or, have your tachycardia exacerbated by eating to much sugar?Eating a large amount of simple carbohydrates causes blood to pool in the abdomen, which causes me to have more OI symptoms. I used to be a candy junkie prior to POTS, but I can only eat small amounts now. I don't have any problems with my actual blood sugar levels.

6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)?Soup, chicken broth, G2 with salt added. My favorite pick-me-up is egg drop soup.

[dsdmom]

Welcome! Here's my stab @ your questions...

1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia?

Yes, yes and more yes! Any virus can do this - not fun!

2. Have any of you had recovery and relapses in POTS (I feel like I have)?

I don't think I've ever totally recovered and relapsed. But I have done much better with some symptoms for a while and worse with others. It can wax and wane. But overall I'd say I"m better than I was 3 years ago. Still not functional enough to work but it's progress nonetheless.

3. Without getting to personal, Do any of you take the birth control pill without any problems?

I personally can not take the pill but for medical reasons unrelated to dysautonomia. OThers on here do well with the pill to supress their periods because a lot of us feel worse around our period.

4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)?

I don't have EDS but yes, I have heard and read that there is some connection. You'd have to do a search on this site - there are many people here who could give more info.

5. Do any of your have problems with maintaining your blood sugar? Or, have your tachycardia exacerbated by eating to much sugar?

I definitely have had weird hypoglycemia issues since developing dysautonomia. Sugar can make my symptoms much worse. I have since cut out grains and sugars and eat high protein, high veggie diet. I can't remember the last time I felt hypoglycemic.

6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)?

I drink V8. That always helps me.

[Mrs. Burschman]

Hi Aubrey. Sorry you have reason to join us!

I just wanted to welcome you and offer one answer. I took birth control pills for years with no problems. In fact, it raised my blood pressure enough that I actually felt better. I ended up quitting them, however, because I have migraines with auras and they are supposed to greatly increase your stroke risk if that's the case.

Incidently, does the heat bother you? I think I'd DIE if I lived in Las Vegas!

Amy

[potsgirl]

Hi Aubrey Jane,

Welcome to the forum! I'm in Arizona, so I'm feeling the heat with you...It seems as if summer will never end...

1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia?

Definitely. Thankfully, I don't pick these up too often - probably because I'm in the house so much.

2. Have any of you had recovery and relapses in POTS (I feel like I have)?

Sometime I'll have a period of time where I feel human and have more energy, but that's not very often.

3. Without getting to personal, Do any of you take the birth control pill without any problems?

Yes, I take Reclipsen, and it works very well for me.

4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)?

Unfamiliar with this syndrome. I have severe OI/POTS and other issues.

5. Do any of your have problems with maintaining your blood sugar? Or, have your tachycardia exacerbated by eating to much sugar?

I have to eat every 3 hours or so or my symptoms get worse, and I feel very sick.

6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)?

I've started drinking a hydration supplement similar to Gatorade called NUUN. You can find these tablets in sporting goods stores (Summit Hut, REI, and online). They're lighter-tasting and I hated Gatorade. Also good is 'Elixir' by 'Camelbak'. It tastes like a lighter version of Kool-Aid. Both are tabs, so you can carry them with you easily and just drop into water. Low cal, low sugar.

Looking forward to have you as part of our group.

Cheers,

Jana

[tinkerbella]

Aubrey Jane,

Wishing you a very warm welcome to the forum! I know you're going to love it here!!!

1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia? Yes, I usually end up in the hospital after a flu. I usually get bronchitis from the common cold and need antibotics. I know now to nip in the bud or I'll be in trouble. I'm already in the hospital 2 days a for fluids so I can't fool around. Even then, it's play by play action with a team who check with my doctor on my HR, BP when symptoms worsen and when I need to be admitted instead of going home that day. I always pack a bag to stay.

2. Have any of you had recovery and relapses in POTS (I feel like I have)? Before my real dx. I had what my PC called flares, but I was never better. Suffered terrible anxitety which was tachycardia, only I never knew it, joint pain, fibro, chronic fatique, weakness on the left side of body, hypothyriod. Since my dx in 07 I've gone down hill way too fast.

3. Without getting to personal, Do any of you take the birth control pill without any problems? Wish I never did as Hormones made me worse, and when put on them last year to stop post meno bleeding for pre-cancerous cells my pots went into a full blow flare and landen me into the hospital twice. My pots specialist said many woman with pots are very sentistive to hormones and do best without them added.

4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)? No one has said this to me as of yet. But I'm undergoing testing to see why my pots is so out of control besides the fact I can't take beta blockers.

5. Do any of your have problems with maintaining your blood sugar? Yes, my pots specialist said many pots pts. have this problem and I have had this problem most of my life. I wake all night long starving and need to eat. They keep a close eye on my blood sugars and for a while I was testing in the night. I found it too difficult as I have this bizzare sleep disorder going on that I don't quite know what I'm doing in the night anymore. I PC suggested no carbs, fruit or sugar after 3 pm. but I must say being bed bound I find it had to comply too.

Or, have your tachycardia exacerbated by eating to much sugar? I don't notice a difference If i eat or not I still have tachycardia as some days I don't want ot eat as all. Maybe why I want to eat all night long.

6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)? I posted a good homemade mix not long ago. I'll see if I can find it for you through a serch as I'm stuck in bed and lost my brain due to my fall last week.

I wish you all the best with your Pots, as we are the same in many ways still we are very different in the way we all react to medications and treatments. What is good for one may not be good for the next person. Age may play a role also, as I've been playing around with this heart of mine mis dxed for I'll say my whole life. Always sickly as a child and when sick as an adult sicker than most.

The GIFT, in all of this has made me a more compasisionate, sensitive, and a much kinder person in life. I try to reach out to others while in the hospital or here to anyone who is new, alone, needs advice, or friendship. We all share our war stories so to speak, we laugh, cry, and bond. These are the deepest friendships of all, as we all know what it's all about, been there, done that and pray for each other. We tell things to each other that people close to us don't or aren't able to hear right now. We also need to remember to leave time to find the JOY in every day and not focus on all the bad as good is all around us!

We get by with a little help from our friends~ Just ask and you will find the support you need.

Blessings and Love to all~

bellamia~