Lovebug

Omg i'm an 18 year old male and i had to have a lumbar shunt put in for this! I was actually getting surgery for My tethered cord and the spinal tap came back to high so they put it in. Weird thing is it didn't bring me any relief and I haven't noticed a difference. I always think i have too little spinal fluid in my head. I had mono when i was a child and I think i might have chronic sinusites so I don't know if they are connected somehow.

Wow...you're much to young to be experiencing any of this stuff!! Hopefully your symptoms will improve with time (it may take a while). I hope you feel better.

Thanks issie and thankful! I definitely love volunteer work but need to do much more of it. The last thing my husband & I did was adopt a nursing home at christmas. I'd like to do more though. As far as being a foster parent, my husband has actually mentioned that to me but I'm not sure I could do it (energy-wise). I have thought about it though b/c it would serve another human in a way they so desperately need. It is definitely something to think about.

I still have my ovaries but I find it very interesting that so many women have so many of these issues with Ovarian/uteral/cervical/hormone problems. Talked with my OB Gyn & a OB GYN in the hospital and they had never heard of POTS. (Imagine that??) Yet I have found a lot of people dealing w/ this that female reproductive issues is a major source of the problem?? I happened to suggest that maybe all of these things were inner-twined to both Docs?? I was dismissed before I could even finish my sentence. HOPE THINGS are going well today

There is absolutely a correlation with Dysautonomia and endometriosis. It's just a shame that more docs aren't aware of Dys. I wish we had more awareness of this disease. Ironically, it was my GYN that referred me to the current cardiologist that is treating me for Dys when the EP cardiologist I saw failed to treat me.

Hi Issie,

My husband & I don't have children either and I truly feel this disease has robbed us of the option. We never really tried to get pregnant but we haven't prevented either. However, with my health problems the last few years, I just can't. We both get really sad/lonely during the holidays but I try to look at it as we were not meant to have children. Thanks for sharing that!

Thanks! I'll be going to my eye doctor soon and I'll have him check it out. I notice I get eye pain often but I don't really have worsening vision problems (as of yet). My ears do what you explain though.

I take Inderal and it helps me (I even take an extra dose if I'm really symptomatic). I did gain weight but I'm not sure if it was the med or the fact that the med made me feel well enough to start eating again, LOL! My advice (if you are sensitive to meds like me) would be to start slow & low (meaning not an extended release dose). My cardiologist prescribed 10mg TID and all I could start out with was 2.5mg once a day. Gradually I worked up to 5mg twice daily and that's where I've been for 7 months. Why take more if I don't need it? I'm happy, my docs happy...so it's all good. BTW, my BP is normal when I'm lying, gets slightly higher upon rising and is sometimes really high when I'm standing.

One day during one of my "storms" my heart rate was all over the place (from 40-120). I was scared to take my "rescue" dose of 5mg b/c I didn't want my heart rate to drop too low. BUT my cardiologist said it would regulate me and I could safely have a heart rate of 20 or so. He said I wouldn't feel good but it would get me back on track. I took it and my episode eventually faded away. I was exhausted afterwards but my beta blocker is my rescue. I have Xanax and used it only once (small dose, of course).

Hi TXPOTS...I was just like you. When I first got sick I was working out everyday (except Sundays). Then I started having diarrhea right at the end of my workouts which, of course, disrupted me. Eventually my abdominal pain got so bad that I quit working out and everything went downhill. It wasn't until a year later that I developed vital sign changes (ie POTS).

Sue, I found this website with a workout routine that sounds perfect for us. It is a "GO SLOW" routine that I never thought I could do but I'm going to give it a try. I agree with TXPOTS, I will settle for a 50% functioning if I never have to go back to what I was feeling at my worst. Here it is: http://www.hyperadrenergicpots.org/BENEFITS--OF---EXERCISE.html

I read that entire website last night and I really liked it. Great information!

That is a very interesting article...thanks for posting. I have never heard of this but find it ironic that one of the causes could be Mono (which many of us have increased EBV levels). I've often wondered what is going on in my head b/c sometimes I can take my pulse just by counting the pulsating pressure in my head from a position change (either from sitting to standing, bending over, or turning from back to stomach in bed). I'm guessing this could have something to do with it b/c often my BP is normal when I check it during these times. Another symptom I have is central sleep apnea. I don't have this all the time (that I know of) but sometimes wake up gasping.

I am scared of EVERYTHING. I used to not be like this but having phobias is so common in Dysautonomia patients. We are in a constant state of hyper-awareness that it is almost inevitable. The way I deal with it is much in the way that Naomi mentions...we don't have much control so there comes a point in time where you just have to let go. Your faith in God will help you and another thing I've been doing lately is trying to live my life while I can in case I ever do get like I was when first diagnosed. Rather than fearing that bad place I was in, I try to live now in this place of functional ability. I guess I just got tired of "waiting to die".

I do have a personal story that helps...I had a half brother that died a few years ago of Lou Gehrigs disease. That is one of the worst diseases in the world to have b/c the person has a fully functioning mind but slowly becomes paralyzed in their own body. Until it gets so bad that the muscles to breathe become paralyzed too. Through all this, my brother had such a healthy spirit of life in him, with a great sense of humor. I figure, if he could go through THAT with a positive attitude, I will go through this the best I can.

I hope you feel better, you are in my prayers!

Dani,

Are you referring to Epley's Maneuvers? If so, I tried this and it did no good. These only work if your otoliths (ears stones) are out of place and causing dizziness. Obviously my otoliths were in normal position. http://www.google.com/imgres?imgurl=http://www.dizziness-and-balance.com/images/epley-cd.jpg&imgrefurl=http://www.dizziness-and-balance.com/disorders/bppv/bppv.html&h=300&w=269&sz=20&tbnid=y5ozeyE1JZ39SM:&tbnh=116&tbnw=104&prev=/images%3Fq%3Depley%27s%2Bmaneuver&zoom=1&q=epley%27s+maneuver&hl=en&usg=__aecEZJlS6Oj_pnPIO0YjYlmFBN4=&sa=X&ei=4f50TbyaIMy1twfL953ZBQ&ved=0CEAQ9QEwBQ

Are you even on antivirals? My EBV levels were through the roof and the doctor didn't even bat an eye. So I've NEVER had treatment and my levels were done a year & 1/2 ago! Should I ask my cardiologist about this?

I am so sorry to hear about things with you!! Hope you are feeling better... I wonder how many females with Dysautonomia also suffer with Ovarian Cysts? I have had several and they seem to exasperate my symptoms. Also, my symptoms & my cyst episodes became worse after my hysterectomy 3.5 years ago. Is it the same for you?

I've had a cyst that self resolved and surgery for ablation of endometriosis. I have thought of having a hysterectomy but am scared to death that I'd have a huge flair...not to mention I'd hate to lose the function of my ovaries in a few years which typically happens after a hyst.

Hi Sue! I've been tested for a Pheo and it was negative. However, I've never had a CT and my symptoms are improved with the beta blocker. Then again, a beta blocker is usually the first round of treatment for a Pheo.

Hi...I have IBS. As a matter of fact, it's one of my worst Dysautonomia symptoms. It will help if you eat things that are gentle on your stomach and don't aggravate the IBS. High soluble fiber (the soft, gel-like fiber) and keep your water intake high to prevent dehydration. I honestly don't feel as though the things I eat trigger it but rather my stress & Dys trigger it. Good luck to you on your job and working all this out.

How do ya'll know you have pooling in the abdomen? I suspect I have this but have no clue how to tell. For years I've had abdominal pain so I can't tolerate tight waist bands or anything like that.

Regarding the high BP...that's me too. Mine is high and my HR can jump around if I'm having a storm...so can my BP. I can be low when lying down, high sitting up, higher standing, & even higher if I stand for a while. Before I was diagnosed with Dys last summer I had an episode where I woke up, rolled over in bed and stretched, and then all of a sudden my heart started pounding. I checked and my BP was 180/120 & heart rate in hundreds. I went to ER and by the time I got there my BP was 160/100. They gave me fluids and I came down to normal. I was exhausted after all that.

Yes, yes, yes....chalk it up!!! Very sorry you are going through all this. It's bad enough when our heart rates are high but when they are all over the place (high AND low) it can be really scary. Good thing you got checked. BTW, I get diarrhea with all my flares as well as severe abdominal/chest pain. I pray you feel better immediately!

So sorry Dani! I hate that you feel this way. Today was a dizzy-day for me. I think it's b/c I'm on my "dot". I've been drinking my usual 4L/day & then some but still get like this on my dot. I can't begin to understand how some of you live with this on a daily basis. I mean, I have slight dizziness daily but not to the point where it affects me. But today I thought I was going to hit the floor a few times (just from turning my head or averting my eyes). And I was sitting down!!!

BTW: what is LDN and why do you feel as though you're immune system will help your dizziness? Anyway, my prayers are that you will have more stable days!

My cardiologist told me that my heart rate could conceiveably get down in the 20's and I'd still be OK although I'd feel horrible. That's not really any concilation but at least it makes you feel better mentally. I hope you start feeling better soon!

I just got my lexapro, i was going to do the celexa, but i have already had lexapro in the past so i know how ill react to it. They do have the lines, so i can break them in halfs, then fourths thank gosh.

last time i started on 10MG! omg i thought i was going to die! i didnt know it was POTS at the time LOL but after a couple weeks the stuff was a miracle drug for my fatigue and dizziness. I started driving again. If you can put up with a couple weeks of loopy and crazy feelings, it will all go away and really help you with the CFS.

I am just REALLY not looking forward to starting it, even at a low dose. I think its the phobia of meds, but i just remember last time and it makes me exhausted thinking about it haha

I took Lexapro a few years ago (before I got sick) and got off after 6 months b/c I wasn't "depressed" anymore. I took it b/c my dad passed away. Well, it didn't take long to realize I needed it again so I got back on it and it never did the same for me as it did the first time. I eventually got numb to life...quit taking it. Fast foward a few years and my cardiologist put me on Celexa. Since I'm so sensitive to meds I got the liquid form and took 2mg of the 10mg prescribed. That was 4 months ago and I've already worked myself up to a whooping 2.5mg! LOL!! My advice...just go slow and increase it little by little.

So, I ask again - what is the standard form of treatment for this response? What if the response is from high Angiotensin II AND low blood volume? Since noriepinephrine can be dervied from dopamine - in that chain - could this have something to do with this response? My dopamine levels came back low. (Before my POTS diagnosis - I was wrongly diagnosised with Parkinson's. Treatment didn't help, but made me worse. My guess is - it upped the noriepinephrine levels even more with the increase of dopamine.)

I for sure have exaggerated response to any type of stimuli - even florescent lighting causes issues. Stress is a big factor in whether or not my POTS is better or worse.

That's interesting....What does fluorescent lights do to you and do you know why you have a reaction to it?

I get this ALL the time and I can't stand it. I just try to ignore it. Valium didn't help and I have never tried my Xanax with it. I've actually only taken Xanax once so.... But the episodes are usually short-lived which is why a suffer through it.

Yes and what surprised me most about having such a high EBV level is.....there was NO TREATMENT!!! I mean, shouldn't we try to control the viral load so that other opportunistic infections do not bombard us? But nothing! My doc wanted to put me on Savella for extreme exhaustion but I heard horror stories of the SE. And now (knowing that I have extreme med sensitivity) I'm so glad I refused to start it. When I started my Celexa (which my cardiologist prescribed since he is treating my Dys)I began with such a low dose that I had to get liquid form. Once I tried to double the dose but I felt so funny & loopy so my doc told me to titrate is S-L-O-W-L-Y! Now I'm taking 2.5mg of the original 10mg that was ordered.

Personally, I feel ME is a similar or overlapped entity to CFS. Kinda like all Dys pts have variations of diseases that cause our ANS to be dysfunctional. Honestly, it is all a big mystery to the medical community. If it wasn't, they'd have us all figured out by now!

I noticed on that list of Rare Diseases that "Dysautonomia like disorder" is listed. What do they consider dysauto like? Interesting!

THAT....right there (that I bolded and underlined). THAT is the reason that this disorder is so under-recognized, as well as what Sarah added. There are so many different names for what we are all going through. But like I posted in another thread, my personal belief is that we all have Dysautonomia but each person has a different subset of diagnoses under the Mother Umbrella of Dys. For example, mine include: IBS, GERD, CFS, POTS, & Fibromyalgia. But each of these disorders is a component of Dys.

Sounds like typical POTS to me. Normally my BP goes up instead of down but once when I was having an episode (I like to call them storms), my BP & HR were all over the place. I would be extremely low if I was lying down (98/60 & HR 50s) but when I got up, I would be sky rocketed (150/110 & HR 120s). I was so uncomfortable and had so much anxiety & other symptoms like abdominal pain, diarrhea, PVC's, Headache, etc. My NP put me on an emergency plan so I implemented it and I gradually got better within 30 or so minutes. My plan is to take my beta blocker (small dose) but that's b/c my BP runs high. It scared me to take it b/c I was dropping low HR & BP's & didn't want to go too low with the med on board but like I said, I took it and it helped.

I'm so sorry you are dealing with this. It is a helluva disease to live with considering it isn't deadly. But knowing you aren't alone makes it better and this website is a Godsend for all of us.

I was told i have CFS. After the epstein barr virus, it was a diagnosis. I am totally confused with the ME thing. Some people say CFS and ME are completely different and other say its called ME/CFS.

I fit the CFS symptoms. The ME sound different. I am getting an MRI done this week.. if it was ME would it show up in it?

ALL this is confusing to me! I dont know if i should talk to my doctor about ME when he already diagnosed me with CFS? he is going to think im crazy..

I agree...I had an MRI which showed no signs of ME (I think there are lesions) whereas I have the typical signs of CFS. I was diagnosed in 2010 (almost exactly a year ago). The doc told me it was fibromyalgia and when I inquired about CFS with my high EBV levels, frequent sore throats, and swollen lymph nodes she said, "yea, well they are the same". It is so frustrating but the good thing about that doctor is that she believed in Fibro (whereas most don't). But, a month later when I started having orthostatic changes in my vital signs (POTS symptoms) my doc didn't know what to do and sent me to a neuro. The neuro told me I had abdominal migraines even though he said other doctors would likely disagree with him (& my GI DID disagree with him, LOL). So through all this maze I've been through this past year, this is my take: Dysautonomia is the mother umbrella of all these disorders. Under which I have the following: IBS, POTS, CFS, Fibromyalgia. So some here have EDS, POTS and some have a different combination but we are all victim to Dysautonomia.

What helped me initially was Vitamin D (as my levels were low) & the chiropractor. Over the summer I got diagnosed with Dys and started fluid loading and a low dose Beta blocker. Later started Celexa for my neverending abdominal pain (it has helped). I hope this helps you...let me know if you have any questions.