jenglynn

Hi Everyone,

I was just scrolling through the different threads and saw somene had mentioned being in a Cluster Headache cycle? (I am so sorry because my iPad died right then of course and then I couldn't find it again-so I didn't see the name).

If someone on the forum has Cluster Headaches, are you referring to the kind that come at certain intervals throughout the day, typically right above the eye, like an ice pick through it, eye tearing, and the most excruciating pain? I get lots of headaches- I've had 10 concussions so I have Post Comcussion Syndrome, have always gotten Migraines but the Clusters were completely different. They didn't last as long (mine would only last 10-20 min) but I'd get about 8 a day and I swear I could time them, they were that precise. My adrenal surges are the same way. I've only had 2 cycles of Clusters in my life- both lasting around 3-4 months and I can tell you there is NOTHING worse than the torture of that pain. When I was diagnosed my neuro told me they were called " Suicide Headaches" by a lot of people because some people don't have cycles- they have them all the time. Can't imagine. I remember it being so brutal ( and I know this is going to make me sound crazy!!!!!) that I would beat myself in the head with whatever I could grab- remote control for example just to try to re-locate the pain.

It's been 3 years since my last cycle and I pray it's my last but when I saw it mentioned here I was just wondering if they were in some part caused by my autonomic dysfunction that I had then- but didn't know yet. Any input would be great....

Jen

I ended up with my worst concussion yet trying to pee in the middle of the night a couple weeks ago.... Guess I was sitting too long and then came syncope- first hit my forehead on the sink, bounced off and hit the toilet and then face first on our bathroom floor- in a basement- concrete with linoleum over it. My face is just now healing up after that one.

I've also had problems with incontinence.... Just sitting down, no urge to go t all and I looked down and I've wet myself. It's humiliating. That's actually how I got admitted to Mayo as an emergency admission- there were a few organs that just weren't functioning.

I see a urologist tomorrow who specializes in neurological conditions so can only hope answers come my way. I drink ALL day long... I drink at least 3- 32 oz cups of Gatorade and 4-5 32 oz of water- yet pee MAYBE once a day, if I'm lucky? And every day I'm losing another pound (lost 10 pounds in the last 2 weeks). That fluid HAS to be going somewhere!!!!! So frustrating.

Thanks for your help everyone! I will let you know what the dr says. I am also prone to bladder, UTI, and kidney infections and this has all gotten MUCH worse after I went through the rejection of the IVIG treatments.

Jen

I only get it when I'm getting near syncope for the most part- then its deafening and I could not anything else no matter what it is. And it's always both ears and my whole head it seems. Then at random times I get it in my left ear, for no apparent reason, and it will last several hours. That happens a couple times a week

Just saw the post on increased urination- for the last month I've had the opposite problem. I take 15mg of Midodrine 3x a day and drink ALL day long. I feel like my bladder is full, but then when I try to go I wait, wait, wait and so on. I usually have to try several times because I sit too long, get tachy or syncope... Learned my lesson after that one! IF I go once or twice a day, it's a miracle. I'm not swelling, in fact in the last week I've lost 5 lbs... SO what is happening to the fluid??? It's very uncomfortable because my bladder always feel full... I have an appt. with a Urologist next week who works a lot with neuro patients. I was just hoping in the meantime anyone had ideas or if they face the same thing ever????

Thanks! Jen

Yeah, I have a difiiculty .yelling- and by about 5pm in the afternoon then usually have no voice. Sound like very hoarse and can hardly speak! Kids and Hubby LOVE this

I had 10 tubes and 6 syringes of blood taken... OMG, I was weak for days. I was pale as a ghost and OF COURSE started my period the next day. I couldn't even sit for 2 days without sycnope- luckily was inpatient at Mayo- but Issie is right NO messing around!!!!!

But you should finally receive some answers... Just make sure you write down any questions to follow up with... I don't know how it is in AZ but I know it's difficult to to get MY personal neuro doctor in Rohester. I left with too many questions......and then I went into acute inpatient rehab. They helped very litte because they kno nothing the condition. They did labs to check and my ferritin numbers - they were a 7 or 8- typically low for me. The new numbers were over 70-something. The doctors rehab thought this was great- but did not share lab results Mayo was agreed upon. I had 2 infusions- during the second I started haing having an anaphylactic reaction, when I finally contacted my Mayo dr. He ordered and my body was in full rejection. When i told him the Ferritin level he got very upset because I'd had 2 more infusions after the fact that is the ONLY good thing tamar came of it was my iron Ferritin went way up (he didn't order that one- just basic CBC) avid he asked me to wait 20 min, and he'd b right back. Well, apparently that's one sign of rejection but THEN

Who would spect rehab drs/therapist I know that? That's why ALL tests go to Mayo. He would have stopped it immediately- and I probably wouldn't have to wait so long and bo sick just to get it out of system. Ugh.

Jen

Hmmmmm.. I'd never want to tell you not listen to your doctor.,, but hives are a pretty serious reaction to a drug. Your next dose could be dangerous. Keep the Benadryl nearby and maybe call an allergist's office to get their opinion as well. Never hurts to ask someone, it's your body. Good luck and let us know how it goes!!

Funny that you say hockey helmet.... My 2 boys play hockey They would think it was hilarious to see me in one! Not sure why he would discourage- only thing he said that "it will give me a false sense of security." that just seems silly. He said that even the slightest bump to my head would cause a concussion- helmet or not.

Wow! I didn't realize how "lucky" I was!!!! I live about an from Mayo in Rochester and my home hospital admitted because of some organ dysfunction- so I was admitted thru the ER. Of course that meant I was inpatient- ugh- but they sent me via their their ambulance company to get to get the autonomic testing. I was there for a while but if you are really sick, maybe try that?

Maybe I was lucky but I'd think most of us would qualify admission on a bad day. I think I was there close to 2 weeks in December.

Jen

Julie,

I can only imagine you have the same frustration that I do when I hear endos say "It is perfectly okay, nothing to worry about. Normal." How can they say it is normal when our TSH are hyper? This is the third endo to tell me the exact same thing: "Don't worry about it" Like you, I have an autoimmune disease (we do not know WHAT it is though) and I have a very strong family history of different thyroid issues. I just an endo a couple weeks ago who advised me to get my levels checked every 2 years just to be "safe" in case there is some kind of family connection. You think????? 5 years ago I was right in the middle- TSH was around 3.5 got something like that... Last Dec it was .68, Then in July it was .41 and then in Dec. it was .07.

This is a huge frustration with me. Obviously over the last 5 years my numbers have been jumping all around. I get the same runaround at Mayo with my Connective Disorder Disease (most likely EDS) but Mayo would not waste time diagnosing it because it has "NOTHING" to do with autonomic dysfunction. They told me if I wanted to pursue the EDS dx I would have to do it elsewhere. Like I am SOOOO excited to go get another diagnosis.. but if I HAVE it and they say I meet the criteria and means of testing I don't get why they wouldn't look into it a little further. They believe my autonomic dysfunction is autoimmune mediated- FINE. But I would certainly like to know if I have EDS (as I have a 13 yr old daughter with the same symptoms) and at least it would explain my extreme hypermobility, hyperextendible joints, numerous dislocations, and the debilitataing joint pain I get at times.

By the time I left Mayo, they were actually starting to tease me about it because I brought it up so many times... they had bets to see how long it would be until I would bring it up again. It was very funny to them but I certainly don't find it amusing. Now i have to go elsewhere and get tested but luckily I just found a local neuro who will actually treat me (YAY!!!! None of the local neuros would treat me because they considered me a liability because basically they had NO idea what I was talking about or how to interpret my tests or notes). Saw him for the first time last week and the first thing he brought up to me after reading through my notes from Mayo was the "possible" EDS and he said we need to start looking into that right away and have your daughter tested at the same time. I am still going to Mayo as my primary neuro and see what they have in mind for Plan B after the rejection of the IVIG. Have to wait until March... in the meantime continuing life in Autonomic Limboland.

Jen

Alyssa,

Interesting you mentioned the twitching!!! OMG.. Ever since Sunday and the last one my legs will twitch- I mean violently twitch- almost every time I'm sitting- sometimes even lying down. My last one did some visual damage I'm afraid- a couple weeks ago I started getting all kinds of odd visual symptoms: double/triple vision, spots, stars, bright lights just "appearing" and staying there or odd things floating around. And my vision is terribly blurry lately. I'm not going to panic yet with this one and visual effects because I look awful today- both eyes are black and blue- and one eye is almost swollen shut- that isn't going to improve my vision much, is it?

I was worried that the twitching was a new autonomic problem... It's so hard to tell- like most of you- I have Post Concussion Syndrome but so many symptoms overlap.

I mentioned a helmet to my doctor and he told me at this point it wouldn't help at all, I'd still get one with the helmet on. He thinks I've probably had a least twice as many as I think I've had because I tend to only get seen if I'm bleeding and/or obvious head trauma. What kind of helmet did you get, Alyssa? It seems like a helmet would at least protect a major one from being a minor one, right? I may look into it on my own. It's really scary to me because now I notice the cognitive issues and everyone around me is telling me how much I've changed (and not in a good way apparently) I am mean, angry, say inappropriate things, etc.. Stuff like that. Personally, I don't see this at all, but I've started to feel very attacked and ganged up on by my family. Any issue,, anytime they don't like my opinion, they blame my head injuries. It's frustrating to say the least! I always thought I was so lucky to have such wonderful family support of my autonomic issues- but this has become a nightmare!

Jen

Hi All,

With my many syncope falls, I get injured quite often. I am always covered in bruises. 99% of the time I don't really injure myself... aches, pains, bruising, that short of thing. Well, over the weekend I fell and hit my head on "something" in the bathroom and got myself one of the worst concussions yet. This was #8 I believe since we've kept track... but after so many my neuro told me today that I can get them so easily I may not even know. I hit my forehead REALLY hard on something- since I wasn't standing but was on my knees the only thing I can think of is straight down on the floor or the toilet THEN the floor. It looks like two bumps so that must have been it. It looks horrible. My entire forehead is just a huge bump and you can't really notice too much yet unless you look at me sideways and you see the size of the "bump". Well, I know it will get ugly... just looked in the mirror and forehead is starting to bruise and the beginnings of one black eye is starting- this has happened before and it looks like someone just beat the daylights out of me.

I am starting to get scared at the number of concussions I have had. How many can I have before I am going to get some permanent damage done to my brain which already doesn't function all that great due to brain fog and concentration issues AND some mild cognitive impairment after my last concussion in November (but I had also had one just 10 days before) so those two were almost combined. This time I am really scared by some of my symptoms, not so much physical.. of course my head is going to hurt..it does every day anyway so this is just a little worse... but some of my emotional and mental: EXTREME anger out of nowhere. I have become enraged more in the last couple days than I can remember ever. Emotional outbursts. Feelings of giving up and discouragement... I am NOT suicidal and would never hurt anyone else- but even though I want to live and get better, when the nurse of the assessment line asked me these questions I told her: No, not suicidal. No, would never hurt others. She asked would I hurt myself? I said: "No, not intentionally, but if I fainted and hit my head hard enough I would ONLY suffer for my children, family and loved ones. I don't really care for myself. I recognize how unhealthy this is and believe me I am getting help! I have an appt. with a psychiatrist tomorrow.

Bottom line, I know ideally we would all never WANT one, but at what number become "TOO MANY?" I have asked several doctors this question and no one will ever really TELL me, other than just to say... let's just focus on getting any more. Well, OF COURSE I know that.. but is this number dangerous already or do I have a long way to go before I need to really worry?

Thanks!!! Jen

This was interesting to read... because I suffer from shortness of breath, from time to time. Now, due to the amount of syncope and the very limited time I can sit upright or stand (1 min or less) I am a lot less active, so I only really notice it anymore after any exertion- because I can't walk, I crawl... and when I am talking. I am not sure how everyone else discovered their shortness of breath, but quite literally it wasn't there one day (never had ANY asthma or breathing or related problems EVER at any time) and I woke up the next morning and it was there. It happened THAT suddenly. I have to say, of all my symptoms, it is one of my scariest, or at least most uncomfortable. Not fond of the syncope spells either but only because I am constantly getting injured... but I developed a whole new level of sympathy AND empathy for people who suffer from any kind of breathing problem- because to have to gasp for air is one of the scariest things I have ever experienced.

Thanks,

Jen

Issie,

The only reason I get frustrated with Mayo and how the DX is how they refuse to consider connective tissue disorders as a factor. I was DX with a "connective tissue disorder", "hyper mobility" and "hyperextendable joints"- genetic counselor strongly feels it is EDS but wouldn't test further because she called it a red herring as far as my autonomic problems- fine- even if that's true (which I doubt) I want to know if I have something. Have a 13 year old with connective tissue disorder- dxed at 12 months and already has had several syncope spells. Paternal great grandpa and paternal grandma both died of burst blood vessels in their brains ( not exact sure of ages- not really old though- I think both under 70)

If its an issue, I just want to know. If not and it is ALL related to this weird autoimmune thing I have going on- fine. But I have a daughter to consider and won't be dropping this because of her, if not myself- but they think I'm crazy every time I bring it up, which is every time they see or talk to me BTW- this is Mayo in Rochester, MN.

Jen

Hi! I know I've asked this in the past- but had concussion #9 over the weekend and my memory took a big beating this time... TSH is about .07 and T3/4 were not quite hypo but borderline and close. What should I be looking for or anything for that matter? Endo called me today and said I was fine and retest in a year due to strong family history of thyroid issues and I have Autoimune Issue f some kind that's being studied but not figured out.

In a way, sometimes I think if I should worry about it all- could be the least of my worries- then I will think what if it's causing issues I don't even know about?

Hate to blame things on my bruised up brain, but I just can't remember and couldn't find thread either. Thanks so much!!

Jen

I get low BP and tachy from sitting (usually, with meds 75/60 and 130-150's sitting). I get dizzy ad cognitive issues. Have had syncope from sitting, but only twice.

Jen

I'm in the beginning of this process. I had some help through a disability resource group and she helped with everything and actually submitted my application. Should have my face to face soon, according to our office. I am on long term disability thru work (which I think makes me more money than SSDI will) so I'm not really worried about it. And I'm lucky, because IF Social Security denies me, the lawyers at my LTD firm step in and take over. Unfortunately for me, they don't double pay, so if I get awarded SSDI (or whatever the acronym is) my LTD saves a lot of money because they only pay the difference.

I don't know WHY but I am not worried about it ( and I am a worrier) but I just think they will approve me right away. I'm probably crazy because I've heard so many horror stories and how many of you have waited for years, but I just don't see how they could look at my medical records and determine I can work. I've also heard its easier to get approved for SSDI than Long Term Disability thru my HR dept and I was approved right away.

Odd, probably one of the only things I've felt positively about in a long time and I hope I prove to right because a long battle is not something I'm ready for! Good luck to ALL of you!

Jen

Quick confession- cant explain it at ALL because I'm always cold, all the time, and really hate being cold, but for some strange, odd reason I like the chills,cold, goosebumps feeling I get from Midodrine. If I'm not mobile, I cuddle up with a blanket and heating pad and it's kind of cozy to me. I'm sure you all think I've totally lost it, but for whatever reason, that side effect is pretty okay with me... But I have to say it jumped quite a bit this week going from 10mg 3x a day to 15mg 3x a day- side effects I mean and talk is to move to 20mg 3x a day in a month. Anyone take 20 mg 3x daily?

Jen

I've been on 15 mg of Midodrine 3x a day since Sept. I don't have many of the side effects youve mentioned although it's possible I did and have forgotten? Now the only side effects are annoying but tolerable... It makes me FREEZING and I always have the chills and goosebumps.

My only complaint is it so short lasting- seems I'm just getting benefit and then it is starting to wear off.

Jen

From my understanding (and please correct me if I'm wrong) Mayo believes that almost autonomic issues are caused by Autoimune issues. The only reason I'm doubting that is because of the violent way I rejected the IVIG. I just wonder if there is more to it and they are just making the assumption. Is that a fairly common and valid assumption to go with? If one has tested positive for auto immune defecincy, is it pretty automatic that the P.O.T.S or whatever we are now calling it, would always be autoimmune mediated versions?

Interesting points Charmed and Yogini... About how we research our disorders so thoroughly while I know many people with other serious illnesses who seem perfectly content to just the doctor's explanations and options. Great observation!

Jen

Rama,

I have a question for you regarding Mayo. They are the only dealings I have with any autonomic "specialists"... I only realized in April of 2011 that things were progressing horribly.... So in less than a year I've gone from functioning to being bedridden. Why does Mayo seem to have such contradicting theories to other researchers? Do you think they are more credible?

I guess this is very personal to me because Mayo in Rochester is less than an hour away and they are very interested in treating me and in my case. But if they aren't opened minded to other ideas, am I doing a disservice to myself and family by staying with them? I realize that I shouldn't complain and am fortunate to be one of the lucky ones to get in so quickly. I never realized that people could have a problem getting in. My cardiologist sent me into the ER as an emergency admission. "Lucky" for me I could not stay conscious in the ER and I had begun having some organ failure so I guess they had no choice but to admit me. But I was a challenge to them from the very beginning and they really wanted to try to figure it out (they haven't yet) but there are some things they seem close minded about when I would bring it up (ex: I have a connective tissue disorder but they are adamant that has nothing to do with my autonomic problems and refuse to look into it). So I guess my question to you, because you are so knowledgeable about the choices, am I in good hands with Mayo (other DX includes: connective tissue disorder, possibly EDS, undefined autoimmune deficiency, post concussion syndrome (7-8 documented concussions- most likely twice that ),hyperthyroid, undefined bladder issues but we think are due to autonomic issues because it is recent- causes random incontinence and urinary retention, migraine disorder, fibromyalgia (diagnosed at Mayo) , small fiber neuropathy, and my autonomic DX per Mayo is: Autoimune Mediated Autonomic Failure Neuropathy and they removed my P.O.T.S DX from my DX list. ) I think that completed the list... But there may a couple things I left off but you get the general idea.

So, Rama, if you don't mind my question and imposing on your much superior knowledge, what is up with Mayo? Why are there so many differences? If you were me... Would you feel comfortable staying with Mayo? I'm willing to go elsewhere if I can get accepted somewhere else if it were a better option. I realize this is a lot of info and I just suffered a concussion TODAY so I'm not sure how coherent all of this was? Feel free to ask for clarification if need be. Thanks Rama and anyone else feel free to chime in! I need all the help I can get!

Thanks, Jen

Interesting... I was just reading an article about this (will think about it and try to remember)... And it stated how most people who suffer from any autonomic dysfunction are typically high achieves. They constantly are under pressure to get so much done.. And will get everything done at all costs. So when fatigue eventually overcomes us, our stress and overly developed sense of responsibility triggers an adrenaline response to get us through. So we may not feel as "exhausted" as we truly are before our disease truly develops and our bodies get used to the extra adrenaline, and as the disease develops- it ends up causing all kinds of extra problems. We push through the fatigue and it teaches our body to be extra sensitive to the adrenal reactions- therefore leading to the later symptoms: tachycardia, syncope, Anxiety, digestive, blood pressure, etc. Our adrenal glands wind up being severely taxed before the illness ever progresses to a severe state.

Gosh, I wish I remembered where I read this, but I'm pretty sure it was referring to P.O.T.S. specifically with hyper mobility and EDS type of illness. I just remember as I was reading it I was thinking : "They are writing about ME!!!!" I've always had symptoms autonomic problems and minor flares throughout most of my life, but as I grew up, even teen years, I always felt such a sense of responsibility that taking care of myself was the last priority. I always relied on that adrenaline surge (that I curse now lol) to help me get everything done.

Interesting how many of us have such a strong sense of responsibility and could be classified as Type A overachievers. I won't speak for anyone else, but this illness has devastated me emotionally. My life has done a 180 degree flip and I've gone from taking care of everyone else to relying on others for many of my needs. Giving up my independence as I knew it and not being able to be everywhere for my family and take care of them how I used to, has put me in a severe identity crisis and depression. I do not know HOW to live my life this way. I'm unable to walk and my mobility is limited to wheelchair and crawling. After so any concussions, brain function is of utmost importance to me- above all else. Actually had a nasty syncope spell today, while crawling, fell down and ended up with a very nasty concussion.... I'm pretty miserable and probably shouldn't even be on here... My head hurts so badly. I keep trying to ask myself HOW I can even begin to get my life back- A life back. My family is VERY supportive, tells me I AM there for them, just in different ways, let me tell you I have six amazing kids and a hubby who does whatever he can to make this situation as easy as can be. I have to find a way to try to re-invent my life, for now at least, and I will admit to all of you.... I'm really struggling. Physically, emotionally, mentally, cognitively, socially, spiritually.... All of the areas I always thought I had all together.... It seems like its all falling apart.

Enough about me... Interesting poll!

Jen

The doctors at Mayo told me that my technical diagnosis is "Autoimmune Mediated Autonomic Dysfunction Neuropathy" when I had previously been diagnosed with P.O.T.S. And now that I think about it, I can't remember if it was "Dysfunction" or "Failure". I have never gotten a clear answer on my question if that means I don't have P.O.T.S anymore? I'm not even sure that DX is correct either... Yes, I tested positive for an autoimmune disorder via some protein serum in my blood...but they can't determine the nature of my autoimmune disorder..so how do they KNOW it's causing my autonomic issues and not a different issue completely? I was treated with IVIG before after the 4th treatment I had a near anaphylactic reaction and found out the next day after labs that my body was in full rejection of the IVIG. So I guess I'm not sure about that statement or much of anything regarding this condition. I was just as confused leaving Mayo, not to mention just as sick, as when I arrived, because they told me quite honestly they didn't know the answers in my case and it was going to be a guessing game.

Jen

Julie! A hangover is the perfect word to describe so many of my symptoms (especially my less "serious" ones but just as uncomfortable and annoying!!!) I have never thought of it in that way before. I also get the awful dryness... ALL over my body. Eyes, nose, skin everywhere, and my mouth the WORST of all. I do use humidifiers in the house and "helps" some but not enough to stop it totally... but I will say that whenever I leave the house (which is almost always to go to a doctor's appt or hospital) it seems as if it gets a lot worse. That leads me to believe it is our dry and cold weather here in Wisconsin and the typical dry atmosphere you will find in most hospitals in my case. I just had an appt. on Thurs. and my mouth was so dry I had to send hubby downstairs to get me a Gatorade because I couldn't take it anymore... but when I got home it wasn't nearly as bad.

So I guess, I just gave you a completely contradicting non-answer Yes, I experience all of those symptoms daily, even at home but it is much worse when I am outside of the home or in a medical center. But the Neuro I saw did say that the dryness was completely normal and expected with many dysautomia patients.

Wish I could have given you a more useful answer. I make sure I always have my Burts Bees lip balm, water, and hard candy with me at all times...

Jen