Katybug

Jenn, I am sending good thoughts your way. It is really hard to hear that the doctors don't know but at least it sounds like this doc is willing to attack the problem head on. That's a positive! One day at a time... Katie

Hi potsgirl93, I did get the shots but have been "down-graded" to just taking an oral B12 supplement. There are newer standards for B12 that say that people testing under 400 may experience symptoms of B12 deficiency even though the normal standard is 200. It is pretty widely accepted in the medical community at this point so you may want to check what the actually reading was on the bloodwork to see if it was between 200-400. That may give you some ammunition to talk to the doctor. But, my levels were between 200-400 and they gave me 3 shots and then I was kind of over-dosed on it...my levels went way high. If you are in the normal range, you may want to try just taking a B12 supplement you can get from the drug store if your doctor says its safe for you. (Take with a meal cause you need fat to absorb the B12.) Plus, the shots are pretty painful as shots go so if you can take the oral version, you can save yourself some pain. Katie

Hi Dani, I just wanted to say I am sorry you are not having a good time of it. This medical system of ours is so hard to navigate. Just want you to know I'm thinking good thoughts for you. Katie

I often feel scared when my symptoms are severe or I have a new one I've never had before. I think it's normal to be scared when you feel like your having a heart attack and a stroke all at the same time...racing heart, chest pain, shortness of breath, nausea, slurred speech, dizzy...These are the things that they tell most people to go to the emergency room for. I think we should all give ourselves a pat on the back that we remain as calm as we do with all these crazy things happening to us. That being said, I do think this is like most things in that time eases the fear to some extent. Things that scared me 6 months ago are not nearly as scary now because I am used to them and because I have learned to gauge the severity of what's going on because I've been living with it. Hang in there!

So last night I was trying to write out Xmas cards when a strange new symptom seemed to occur. When I had to start concentrating for my hand to keep writing correctly (because sometimes my hand gets weak and shaky and I will write incorrect letters if not very careful), I would also experience something with my eyes. They (my eyeballs) would quickly jump side to side several times and I could not really see during this. It was less than two seconds in duration and I was fully aware it was happening. It only happened when I was writing the cards. It was like someone put my eyeballs in a shaker and shook it a few times very quickly. Does anyone else have anything like this? It feels scarily close to what I imagine seizure activity feels like but I have been evaluated (January) for seizures and nothing was found. My eyes were thoroughly checked in January and they are in good shape too.

I'm with firewatcher and Frugalmamma....some meds I'm very sensitive to and others don't affect me at all. For example, my florinef and metoprolol have to be very low dose, but, I am not affected at all by high doses of my promethazine or belladonna even though I only take them maybe once a month (so its not a build of tolerance). I just feel my symptoms ease up with these last two but don't have any of the other side affects that most people would experience. Same with morphine when I was in hospital. I had never had it before but it literally nothing to relieve the pain of my kidney stone. They had to switch to high doses of Delaudid (with Promethazine for the vomiting) and I was still not affected and barely had the pain controlled. I feel like some of it has to do with the adrenaline issues for me.

I believe OI is the blanket that covers all of things we are discussing...POTS, Orthostatic Hypotension, or Orthostatic Hypertension. And I'm pretty sure you can have combinations of them (i.e. POTS + Ortho. Hypo., just POTS, POTS + Ortho. Hyper.) I think the distinctions of which you have are important to treat properly even though they seem to result in very similar symptoms.

Probably good to try it at night and over the weekend. I also gradually increased the dose. Over the course of the first month on it, I noticed a gradual decrease in the number and severity of my migraines. So, you may want to keep track of your migraines over the next few weeks to see if you can see improvement. That way, if you tolerate the med ok, you'll also know that it is treating more than one thing for you. Hope you have success with it!

Yes, me too. It seems, for me, to be related to the other post you made recently about the dizzy, drunk, spacey feeling. I have even noticed my vision playing into it too. (You know when you were little and would put your grandparents eyeglasses on and the floor would look warped and it would feel funny to walk...that's what my vision does when I have this sensation.) I, too, pass all the neuro tests including the sweat test to check for nerve failure.

CC blockers are known to potentially increase your heart rate. It is an occassional treatment for people with POTS but not very often because of this potential. If you can trace the reaction to the drug each time you take it, I would not continue. (Can't tell from your post if a doc told you to do this or if you were trying left overs from a previous script. No judgement here, I swear...but if the doc told you try it, I would definitely put a call in to the doc. If not recommended by doc, then I probably wouldn't continue if you're reacting badly.)

I was treated for migraines 4 years ago with Verapamil and it really helped. At the time, my neuro (prior to POTS dx) monitored me closely at first because Verapamil can lower your BP (mine was similar to yours and it didn't change at all so that was good.) I also had great relief from the headaches, in fact, my overall feeling of well-being was better on Verapamil. I was eventually weaned off of several meds including this as we tried to see how my Lyme symptoms would be without meds. My current POTS neuro won't put me back on it because he said it can increase heart rates and my cardio agrees. I have, however, read in several places that this is used to treat POTS with success in some people. Good luck with it!

Hi Steven, I get inexplicably angry instead of crying but I think it all comes from the adrenaline. I think its both a vicious cycle and a delicate balancing act. Do enough activity to somewhat offset the surges but not so much that you make yourself have a crash either. Plus, when I over-do, I start triggering more surges, so I have to work off a little of it and then rest even when I feel like I could do more. I don't think there is a perfect solution.

Because I was treated way back in college for depression and my PCP treated me for anxiety 4 years ago (before we knew that it wasn't anxiety, it was Lyme and POTS) these notes are in my medical records. I had several specialists blow me off because of these notes instead of trying to find a dx and I also ended up having to meet with a psychiatrist for my SSA Disability claim. The psychiatrist was honest and told me flat out that he didn't know what POTS was and found me "able to maintain meaningful employment" because I didn't give suicidal, homicidal, or psychotic answers to his questions. He, in fact, noted my above average cognitive skills. Great...how many employers will let me work 2-4 days a week for about an hour when I feel like I can because I never know which days and times these will be??? (P.S. This was the only doc SSA had me see...no Cardio, no Neuro. So off to the appeal process we go.) So, I'm not telling you this to be negative, but, it has definitely affected my treatment and my disability claim, and, if it isn't true, it shouldn't be there.

Hi mully2014, Glad you found this website. I think you will find some really great support here, as I have. I am sorry to hear that you are not well but we share great information and give each other tons of support. Katie

Can you try soups that may have a thicker consistency but could give you nutrition and fluids at the same time? Like butternut squash soup, potatoe soup, tomato soup. I know the GI issues make it hard. Also, watermelon? Sorbet?

Hi Naomi! Let me first qualify "better days"...I can leave the house by myself 3-4 days a week right now for about 2 hours at a time. More than 2 hours is asking for trouble (and the trouble usually starts with this sensation you are describing of being dizzy/drunk/disoriented.) BUT, I'm not complaining as I was house-bound (except for when my mom would take me to the docs or to run to the pharmacy) for 3 1/2 months, so any time out and about is great! Two things that I started doing differently was forcing myself to walk my dog and we found a better profilactic migraine med for me. I was already doing the recumbent bike but that never really makes me feel like I am getting a workout (I was reallly fit before all of this.) But, my poor dog really needed some activity as she is a working breed. So, I started getting up really early to avoid the heat in early Sept., and would take her to the end of the block and back. It may have only been 5 minutes at first. Since Sept., we have worked our way up to longer and longer walks. Our major victory was this past weekend at the State Park Trail where we actually made it for 40 mins. and 2.5 miles. I cried some happy tears at the end. There are some days, like yesterday and today when I could only do 15 - 20 mins. because I wasn't feeling too well, but, I still try to do some so I don't backslide too much. There were days that I had to sit down on the curb and take a breather and I am careful to pay attention to what my body is telling me...if things are going down hill, we turn around and go home. Now, with cooler temps, I wait until afternoon so I don't get cold and spend energy shivering (shivering always makes my POTS go nuts.) I also accept the fact that I will feel like "ick" when we finish our walk but I am willing to deal with it for the benefits for me and my pupperdog. When I stop walking, I almost always crash to some extent because I have sudden pooling in my legs. This is how I know when I can go a little farther...if I don't crash for a few days then I know I can start going a little farther. It has been hard some days but I push myself as hard as I can without it being dangerous. I have to say that seeing the progression has also helped me mentally...like maybe there's some hope for me yet! The migraine med, Depakote, doesn't help my POTS symptoms but I was getting severe migraines 2-4 times a week so not having the migraines seems to be allowing my body to deal with POTS a little easier. I don't have severe pain on top of all the shaking, dizzy, pre-syncope, tachy. So, no big medical revelation. I just knew I had to try cause I was not getting better on the couch and I was bored to tears. I sometimes wonder if its just a fluke that I am going through a good spell. But, I just take what the day deals me and try not to worry about how I will feel tomorrow. If I can walk the dog, get coffee with a girlfriend, and go browse Target for 1/2 hour then I do. If I pay for it tomorrow, oh well. I still struggle the other days each week but I'll take the baby steps. I hope you can find something like this that works for you.

Great that you got a diagnosis!!! Good luck with your new treatment program!

Hi Naomi, I had that feeling constantly for about 4 years (drunk, dizzy, floaty, spacey). Just recently, since I have started to have some better days, I have been without that feeling for periods of time (some says I don't have it at all right now.) It gets worse/comes back when I am tired or have done too much because I was feeling "better" that day. I still have it constantly on the "bad" days. The only two things I can definitely link it to are my level of fatigue and my level of cerebral perfusion. When I have the cognitive issues like word search and slurred speech, this drunk, dizzy feeling is always worse (that's why I think cerebral perfusion.) As far as adapting...hmmmm. I won't drive anymore when I feel like this because I feel like my reflexes are delayed (the docs swear my reflexes are fine but it doesn't feel that way to me when cars are whizzing past me at 70 miles an hour on the beltway!) For me, the driving with this particular symptom was the scariest part of it because I feel like I am a fraction of a second behind the rest of the world. I try to get as much rest as possible when I feel like this mostly because I know this is the precursor to much worse things to come if I don't cool my jets. My compression stockings help a little so I wear them during the day even if I'm laying around the house. Salt loading/fluid loading helps to some degree too (which I do everyday but I can tell when I haven't loaded up enough because this is definitely one of the first symptoms to get bad.) Because I also experience the cognitive issues with this sensation, I now keep a detailed calendar of appts or dates I need to remember and I also write myself notes and make to do lists because I'm so used to the feeling that sensation that I sometimes don't notice that I am "3 sheets to the wind" and won't remember what happened or a name/date 5 minutes later.

As far as I know, other than trying to treat the larger issues of blood pooling/cardiac inefficiency/cerebral profusion, there aren't any specific treatments for the cognitive issues. (Unless you want to try supplements like ginko that can help increase your cognitive ability.) Generally, the salt and fluid loading, florinef, compression stockings are the kinds of things that will help get a little more blood back to our brains. (I know it's not a really good answer. I really wish I had a better one.)

Actual incontinence has only happened once in the last 4 years but I am so sorry it is happening to the two of you. The day it happened to me was definitely one of the low points of this whole sordid affair known as POTS. I do have a related issue since that incident though...I will not feel like I need to go and then all of a sudden..BAM...I've got to go now and I don't feel like I can hold it. I feel like on am on the verge of bowel incontinence when it happens. On regular POTS days it may happen once or twice a week. When I am going through the episodes when my GI system is flared up, it happens multiple times a day. I have felt like my issue has something to do with motility issues. Since you couldn't feel anything, I almost wonder if yours has a neurologic component??? I can definitely feel what happens with me, I just don't feel like I will necessarily be able to control it. Best of luck in finding an answer to this symptom.

Jaquie, I don't have any really sage advice but I just want to tell you that I am sorry you are feeling so bad and that I am thinking of you. I went through about 3 months of being almost completely bedridden in summer/early fall and now I can leave the house for a couple of hours most days. There is hope and sometimes we just have to wait out the bad times. Thinking of you, Katie

Have this too. It feels like I'm drunk and slurring plus the word search and mixing stuff up is always troublesome. I also sometimes will say a word in the middle of a sentence that makes no sense in place of the word that I can't remmeber. I hear the wrong word come out but I can't stop it. I've had all the neuro tests to rule out anything serious and several docs have said it is from the cerebral perfusion that comes with POTS.

Jenwic, My chiro even made adjustments to the bones in my face around my sinuses with his activator tool to help with my headaches. It felt sooo good!

Emma, I also get what you are describing quite often and it is associated with my POTS. When my other symtoms are worse so is the chest pain. Mine goes across my chest, into my left arm and clavical, and into my neck (both sides but worse on left). Along with the pain in my neck it feels like all the vasculature in my neck constricts badly when I have the pain. I also often feel like there is severe pressure on my chest making it harder to breathe (although I am technically breathing fine and have no asthma). These symptoms do get better when I lay down but do not go completely away on bad days. I used to get really scared when I would have this but I have gotten used to it and I can only say that I hope that I will be able to distinguish what I have from POTS vs. a real cardiac crisis should it ever happen one day. Katie

I am with you, misstraci! I just got a call (Thursday) from the endocrinologist I was trying to see that my out of whack thyroid tests apparently aren't out of whack enough for her to see me. God complex maybe???? My T3 is 80 pts higher than the high normal and every woman in my immediate family has either Graves or Hashimoto's! She sent my PCP a note to do some other tests and then she'll re-evaluate and decide if they will honor my appt. Like I really want to see this lady now. So I will be finding a different endo that wants to actually be a healer and not just a heel! I hope you keep looking for another doc too! They are out there, they're just not easy to find.