tinkerbella

Migraines, I had them before my dx, but I know I had pots then but was misdex. I take Topamax and it helps but, I have breakthrough headaches and migraine varients that feel like I'm having a stroke on the left side of my face. I can have episode where I lose moments of vision. I see white lights small and large like fire works. Sometimes I just have to live in the dark as I just can't stand the light. I also have terrible dry eye and have to have plug put in my tear ducts and with taking restasis drops twice a day. I have retinal problems in one eye, common with pots so I keep right on top of it. I also have a med call Migranal, it is a spray that goes up your nose it works right away, that is if it will prime right. Meds you have to prime first you end up losing a good part of the dose in the air. Down side is you can only use it once in a while or you will get rebound headaches. I guess you could say, I always have this dull headache in the background going on and I fight my way out knowing how horrible they can be. The best thing is to nip it in the bud once it starts. Keep cold wash cloths in the freezer, sunglasses with script in them for indoor and outdoor use, shades down, turn off all stimulation. My neuro Pots specialist says that usually we are dehydrated and drink, drink, drink. Also if you are drinking sports drinks that is not good enough you need to be drinking equally as much water ~ I hope this was helpful to you ~ : ) Hugs BellaMia ~

Lieze, You are so sweet! I wish we could sit on a great big porch and have a party and be normal. I would love to see all of you who have been there for me over the years. Oh how we would laugh, and laugh. I'm so sorry about all your food problems and I understand about the energy part and getting up. I struggle with that myself. It's all I can do to go down stairs and really pull something together for dinner tonight. But, I have tolaugh about it or I would be crying forever. We must lift up each others spirits so they can soar. Then we go back into the world of our families and try to survive to the best we know how teaching them what the life of Dysautonomia is all about ~ We will survive!!!! Bellamia ~

Welcome Heather ~ I wish you didn't have to join this elite club, but let me tell you that you have just found yourself the best, most caring, loving, knowledgeable friends for life here. Here you can be free to say what you want, and no one is judgmental. Most of us are in a similar boat trying to stay afloat. Sometimes we drift away for a while, but back we come when we need help, information and a kind word from the ones we love ~ I wish you the best here and count me in as a friend. I believe we are all here for a reason. Why????? I think God made us all stop and stay still and made us kinder, a bit more understanding, able to reach out to others and we know better than anyone how to research anything. We arm ourselves up with information for ourselves and for others who come here. So I hope you stay with this illness is a short one. I wish I could say the same for me, but I already know my deal ~ Good Luck sweet one and the only dues are: kindness and respect to all ~ I think you're going to like it here ~ BellaMia ~

I don't know if I am or not ~ Although these have been happening way before I ever started coconut water. I'll make one tonight and tie myself into my bed and post a huge sign that says hit video camera on laptop and see if I can give you all a show tomorrow on youtube. I better wear my cutest jammies tonight and wear makeup to bed tonight. Please excuse my messy bed room. I've hired an organizer to come next week to help me clean the room out ~ I don't know why that privacy shade on my video cam won't work and let me be on an island beach some where. Oh well, I'll see what I can do for you all ~ Keep the ideas coming, I go next week to the docs. Thanks so much for all the support ~ Wish I had a hot dog and a hamburger right now. Darn it, why does my family have to go away on vacation on all the holidays? Come on doggie, "let's go eat some kibble and share a shake". Bellamia ~

The other thing that was happening to me was my arms and legs feet were falling to sleep recently also.My Calcium Channel Blocker had been increased I was taking 4 pills of 120 mg er between the hours of 5 am and 4 pm. Most people would take one every 8 hours. Also my Gastrocrom at 1/2 the dose 4..ampules were both in question as making my body fall asleep. the topamax was a long time med for migrains. They pulled one CCB away and 3 Gastrocrom. I had other symptoms. Swelling feet, swelling face, falling asleep of body parts laying and standing reallly bad. It has really helped pulling these meds but which one is the culprit????? Now I itch and rash away like crazy. For those of you with mast cell, I found you can make your own cream with the viles of Gastrocrom. Dr Castells couldn't give me the dirctions, but I saw it online. Good to know as insurance won't pay for cream. Anyway, I hope one of these answers helps you out or at least someone here. I'm itching and scratching away ~ Take care all ~ love ~ BellaMia ~

I think I know what you are talking about, are you alseep and kind of awake but your body can't move??? I get this all the time and have since I was a teenager and if so I also struggle to talk. It is called, "sleep paralysis". If you Google it you will find that people think that they think they are being abducted by aliens and all kinds of things. It used to scare me so bad that I would be afraid to go back to sleep. Do to my memory right know, I prefer if this is it that you look it up. The knock on my noggin is stopping recall to a lot of stored info on board. Topamax will give you tingling pins and needles feeling when you start it. It goes away after a few weeks, It's great for migraines, helps pain, and added factor is weight loss. It is a seizure med but usually started out in a very low dose and worked up to your doc decided dose. I hope SLEEP PARALYSIS is all that is wrong with you, but you need to call your doc to make sure. Bellamia ~ x's

Anyone one else having seizures with POTS, now I know I didn't catch them from my dog His are so frightening, I wonder if he's as afraid of me, as I am when he is having one. I need to install movement activated video cameras to catch the event . Sounds like a good idea ~ Oh well, I talk to my son and see what it would cost ~ BellaMia ~

tennille, I hope I spelled your name right.... I had turned off all apps and web pages also, but every time there is a big update they do it again. So, I was out for the first time today at an open studio art class. Told the instructor, just in case something happened to me my medical info was in my back pack. They made me feel like I was a Picasso with my now trembling Potsie hands...Picasso once said, "It took me my whole life to learn to draw like a child". After sitting for one drawing my was head killing me and I had to lay my head down on the table to draw. I peeked up to see if anyone noticed. The instructor had her eyes glued on me and had written down my name. I said to myself, "suck it up Bellakins or your out of this fun class and back in beddykins on facebook forever and you'll never ever meet a real friend again". So, I'm home exhausted!!!!!!! In bed with my loveable doggie ~ Then thinking back to my childhood I remember I could never hold my head up for very long at school. I'm weak, this has been a long progressive illness. I've known that , but it was a light bulb moment once again. Please do be in touch ~ We will overcome Facebook and survive BellaMia ~

Hi Bella 27 I'm Bellamia... I just happy you have enough energy and would be able to work. I'm in the hospital too much to work and the brain fog is bad. I wish you the very best of luck! Bellamia ~

Did you see FB today... They want to know every way you communicate with your friends.... I think they are the government. LOL This I saw on the new after the face recognition on everyone that maybe one day they will sell all of that information. Crazy ~ What do I do now?????? I falling into the giant facebook hole of horror. Oh, check your privacy settings weekly now, they are very sneaky snakes. Mine get changed without me touching them. Now how did that happen? If anyone needs help contact me, as they are tricky or Google privacy setting and for the month and year and follow the directions. We have enough to do just being chronically ill with POTS ~ Without having to worry about are settings ~ If you try to get out they keep all of your info for ever.......... OH nooooooooooooo!!!!!!!!! What have we done, we just wanted friends? Bellamia ~xxxxxxxx's

Rach, I'm so confused on facebook and feel like where you use your real name,I feel like it's breaking hippa privacy laws when it comes to medical info support groups. Even support groups you physically go to you agree to not talk about anyone within the group once you exit. People have signed me up without asking me first. Then when I can Google a person's name in a group and it brings me right into the group I find that a little creepy. I DON'T want certain people looking up what is wrong with me. On my own page I'm trying to educate my family by having friends chime in so they know I'm not the only person having these weird symptoms. I do have WONDERFUL friends with POTS and have met more on FB. Would love to really know a group is not posting my name and info everywhere or another group where you have a fake name. I just don't get it as everything is so hippa these day medically. I'm I alone with my thiking? Here we are under false names and I feel safe. Dazed and Confused these days ~ Bellamia ~

I got my eyes checked out to make sure my retina was not breaking away with all the white flashes ~ I do have a hole for now that has not broken the surface ~ It does distort my vision, but they think my face going numb is a variant of a migraine ~ Come back if it gets worse ~ migraines vary from day to day on how debilitating they are. I mostly live in dark rooms, cold face cloths on my head or neck, wear sunglasses with malingerers when I can find them indoors on computer. bellamia ~

I can't do hormones...estrogen sensitive, so very good question????? I've been making nutritional shakes with almond milk, Greek yogurt, kiefer different flavors one brand I think was soy, (which truns to estrogen ) frozen strawberries, frozen blueberries, can of coconut water, frozen bannana, and blend. I then freeze the leftover in ice cube trays. It's all I want to eat... What kind of seizures do you have? Did what I describe sound like seizue activity? I have had 2 sleep studies in the past that show none of these. Ty for answering on this holiday weekend. I'm very greatful. I'm so exhausted and need to bring my dear dog out who also has seizures as a result from heartworm meds toxicity. blessings to all, bellamia ~

Also with POTS can seizures be a part of it ? I'm going to be checked out at Mass Gen in two weeks at Neuro. so I'll be in good hands. But till then I'm concerned. Thanks, and have a safe weekend everyone ~ Bellamia ~

I'm having a rough time. Thought I was near fainting and hitting my head over and over again at night after night. I also am having weird dreams and talking like I'm acting out a dream, at the same time and trying to walk back to my bed from the bathroom room staggering , falling and head dropping up and down over and over again. My son told me today that I was in REM sleep and having seizures. I've had a problem with my mood after these had happen. Does anyone know what I'm talking about? I've been very confused all week since they happened. scared ~ This happen every summer when it is hot or maybe it's being on the computer and tv on in the room. I don't know. Usually tests show my BP is about to faint. Bellamia ~

I'm being tested for neuro muscular disease in July. for a second time...I wish you the best! hugs, Bellamia ~

I also meant to give you a big hug and say when in doubt check it out! It drives me nuts!!!! I don't like that you say it is going near your throat. I would go to the ER if mine did that. We can't fool around with anything, our bodies are different. Please call your doc or go to the ER. Let us know how you are. I just reread and see you are having a bone marrow test Thursday. My prayers are with you. xxxxxx's Bellamia ~

Do you happen to live in New England? I can't stop itching. I am on all the meds...and it wakes me up in the middle of the night. The numbness of the face I have it and have had it forever. It feels like a stroke. I have had MRI's and will tell my PC tomorrow as now I get tremors. My neuro thought I was getting a variant of a migraine. The pollen is the worst ever here. I don't know if this helps you any, but I hope so. I have also been getting numbness more and more frequently in my arms and legs and hands and feet. I wish you the best ~ Bellamia ~ the other itchy, tingly, numb mess

Another thing I think people have to weigh in is how much medication they are on...Drinking and meds really don't mix very well. Some people who like myself suffer with low BP at night time wouldn't want to fiddle around with anything that may lower my BP any further. even though I do my best to fill my tank. I lose most of it. My dog senses when I really low and wakes me and I have my cooler by the bed or stashes right in bed with me. I really don't care anymore as I've listed before above. I just keep thinking of things as others list things and people continue to offer me drinks where ever I go when I finally do get out. To each his own, just play it safe all my dear friends ~ I love you all ~ Bellamia ~

Jana, Sweet Jana, I need to send you an email....I'm sorry all of this is happening to you. I spend all the time in bed also. My arms and legs will jump around at night, I now have tremors, have near fainting episodes in the night. I'm also having my hands and feet falling asleep. FATIGUE is terrible and that is why they are doing a mito workup in July. I hope you get some answers soon. (((((hugs))))) love, Bellamia ~

Sorry to hear you are having a rough time also. Pleurisy really hurts bad. I hope you are feeling better. I often tell the ER docs to come to this site and read the Web site info pages. I wish I dared to carry my POTS video changes with me so they could watch it They don't seem to understand my doctors notes and we have discussed this at my last visit and he has written a letter to the admin of the hospital on how important my meds and how they are dispensed are. Also, that I do know what I'm talking about when I sick and can't argue with ER docs about my meds as it take too much energy out of me. I hope and pray for a miracle for for each and everyone of us tonight. I hope you all have a good night's sleep. Hydration all day tomorrow and I never know what that may bring along with that. Good night all ~ Hugs

Yes, Please share what test you had done. Thank you very much. I'm being sent for more tests in July, as that is the soonest I can get into Mass General, Boston. Thanks for any info you can give us Us POTSIES, who don't feel much better, must stick together!!!! Love all of you ~ xxxx's

That's what I wondered...But mine are low. They just chocked mine off to another virus and said, "don't come back to the hospital even if it is high again. " lol This was not my regular hospital, as an ambulance had to take me to the nearest one. I feel lucky to have a team that understands that 98.6 means something is brewing in this potsy body. Well at least most of us understand and we know it is something that happens with all of us. My doctor also mentioned that in some people it can be a drug allergy. It has been a long week for me and I don't remember if that has been mentioned or not. They kept trying to tell me I was allergic to Tylenol and I'm not along with a few other meds. My list is long and it is like playing telephone when one hospital talks to another. Tylenol, I guess can cause drug fevers. I can't take much to bring my fevers down and at one point they wanted to blame it on that. I need to send a list of corrections to the hospital before I forget. It never ends, but could be worse.

It's all in the glass to me. I like a pretty glass to drink in. I'm funny enough!!!!!

I just had them recheck my EBV and it showed the past very high nothing current, I was on antibiotics and I said to the doc could that have messed up the test and she said it may have. I think all our meds mess up blood work.