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 At the end of my rope... (Page 1)
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lakota58 Member Posts: 155 |
posted January 28, 2004 03:29 PM
  
Lindahazz (or anyone!) - I really need your help since you seem to be the only one I've seen mention problems with arrythmias. I've been following my diet of tons of water (about 80 oz a day) - no sugar, magnesium, B6, CO-Q10, veggies, fruits, fish - for about a month now. I really felt better for about 2 weeks - not even too many palps. But then this past Saturday I woke shaking like a leaf, like someone has me hooked up to an electrical outlet - my insides have not stopped buzzing yet. I've had several arrythmia episodes every day which has never happened - usually 2 or 3 a week. My panic is to the point of hysteria even when I get a mild palpatation, I fear the dreaded arrythmia. Driving home from work on Monday I had one that started with a chest pain, then 4 hard thumps with pauses in between. I was so lightheaded and exhausted for hours afterwards - but felt a little better once I ate something. Has this ever happened to you? I don't understand why it would get worse all of a sudden, especially when I am following all the advice of water and supplements. I'm writing this from work and honestly, I feel like a basketcase. My hands shake continuously, my ears ring, my whole body is buzzing inside - which I'm sure is panic. I'm trying to breath normally but shaking so bad - my back actually hurts from being so tense. What do you do to alleviate this? Xanax and the calcium blocker is also doing nothing. My doc won't see me till my appt. next Friday. I just want to find a way to make it all stop - I don't believe this won't kill me, it just feels too bad. Any advice? I even try deep breathing, music, reading, concentrating on my daughter - then I get zapped with an arrythmia that sends me over the edge. Any advice please? Thank you so much! Lakota |
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tigerlily Member Posts: 22 |
posted January 28, 2004 08:25 PM
i just wondered if anything has changed in your life recently? Are you on a new med, or trying to wean off of something? I recently had a similar episode of feeling absolutely terrible and terrified all at once. It was like I was on edge all the time. I had several things going on though and I think they just all caved in on me. I had surgery and my mom was helping take care of me then a week after she went home she was diagnosed with a brain tumor. I wasn't able to go be with her for her surgery [I am in Iowa and she is in North Carolina]. I was bearing a lot of guilt over it since I am a nurse [why didn't I know she was sick?, she was taking care of me when I should have been taking care of her, she is having surgery and I am the one in the family that would know what questions to ask her doc, etc.] Plus I wasn't getting paid while I was off work and I ended up with time off that I wasn't planning on so that was even less money i was getting. I don't mean to make this lengthy, but I think sometimes we don't realize until hindsight how much is actually going on in our lives. Just buying a car that I wanted was enough to give me palps. Even good stress to us can be interpretted by our body as bad and set off the whole process. The only thing that I found that helped during that time like a lot of other people on here was reading the bible. Once I got my increasing anxiety under control then things gradually started to get back to "normal". I do still start to get a little tense when start to feel funny from anything and I just try to talk myself through it and then as quick as possible find something to occupy my mind. I hope you find something that works for you. |
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Oceana Member Posts: 205 |
posted January 28, 2004 09:21 PM
As Tigerlily suggested are any medications different? Did anything change between the time you were improving and the sudden occurence this week of irregular heartbeat? Whilst Coenzyme Q10,VitB and magnesium are excellent supplements, some brands may use ingredients/fillers which may effect heartbeat in someone susceptible to irregular heartbeat. I've had this problem particularly with certain brands of CoenzymeQ10, it took me a while to find a brand which didn't cause this problem, also some Vit B's. Has anyone else experienced adverse effects with vtamins &/or particular brands of vitamins?? Also, while magnesium supplementation can be very helpful in regulating a heartbeat, Too much magnesium has the opposite effect and may cause arrythmia- It is all a VERY DELICATE BALANCE. Because of my past history of arrythmia and sensitivity to meds, WHEN TAKING ANY NEW MEDICATION or vitamin or even different foods FIRST I take a tiny portion of the tablet/capsule to carefully assess any adverse effect. Everyone's body/reaction is different it is important to very carefully listen to your own body-(a therapeutic dose for one patient may be a toxic dose for another) and, I think, always start with a very small dosage. Also, it may be worthwhile checking out possible interreactions with Zanax and calcium blockers and also any possible adverse affects of these medications. Some drugs may develop adverse reactions over time though I'd be way more suspicious of a medication/vitamin you may have begun taking recently. Other things may also cause an exacerbation of irregular heartbeat, namely infection,caffiene,alcohol, food additives-msg&other flavour enhancers, and, I think, exercise extreme caution with guarana and ginseng. Also, whilst staying well hydrated is essential with MVP(approx8 glasses a day?-what do others think here?) too much (+ also depending on the type of water consumed) may effect electrolyte balance which is essential to a regular heartbeat. well wishes! [This message has been edited by Oceana (edited January 28, 2004).] [This message has been edited by Oceana (edited January 29, 2004).] |
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lindahazz Member Posts: 642 |
posted January 29, 2004 07:36 AM
Hey Lakota, Sweetie, you're doing all the right things, so please don't beat yourself up. True, us MVPers drink our water, take our vitamins/supps and stay away from all the bad stuff. But that doesn't mean we'll never have another panic/anxiety problem, palps or other symptoms. It just means that we are taking a pro-active position in dealing with our situation. It means that we are taking control and doing everything we can to keep the wolf away from the door. I sincerely doubt that you did anything wrong. As Tigerlily and Oceana suggested, med changes and stress can wreak havoc on our symptoms. Stress alone can take over our well being. We don't always have control over the stressors but we do have control over how much we let stress affect us. Before we can control the panic, palps and multitude of symptoms, we have to start with our attitude and thought process. First think in terms of controlling the panic. Then think about how to control the symptoms. A strong mental attitude will go a long way in gaining control. And, please think in terms of controlling symptoms - not eliminating them. Trying to eliminate them completely will only result in frustration. I have a friend at work who has learned how to talk herself down from a full blown panic attack - heart racing at 220 bpm - the whole bit. It took years for her to train herself to do this. It won't come over night but you have to start somewhere. With practice you will learn to take your life back. Let us know what your doc has to say. We're always here to help you through this. Stay calm, stay strong. Linda |
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lakota58 Member Posts: 155 |
posted January 29, 2004 10:39 AM
Thanks guys. Its so great to have you there - I feel bad because I never have much to give back to anyone in the way of support because I am such a wreck. As far as any changes go, the calcium channel blocker I'm on I started about 6 weeks ago, so it shouldn't be that. The magnesium and other supplements were about 4 weeks ago - felt great the first two weeks - and the worst I've ever felt now since last Sat. I'm taking 250 mg Magnesium 2x daily; 100 mg B6 once daily; 150 mg CO-Q10 once daily. Nothing has changed in my life besides adding supplements and eating healthier - which is why I can't figure out how I can be feeling so much worse. I know the symptoms will never go away - I remember back when my Inderal used to work wonders. They did not take away the symptoms, but the thuds were much softer somehow so I didn't get sent into a panic attack. I keep trying to remind myself how 18 years ago when I was homebound due to panic attacks, the crushing feeling and pain I had in my chest that sent me to the hospital every week. That is what I'm feeling now - I am so tense and afraid of dying I can't get myself out of this feeling of hysteria. I cried uncontrollably this morning in my husbands arms before I left for work. I want so much to be stronger - but I don't know how. All the self talk does nothing. I really admire you all for your strength. It would be nice if they had a pill to cure weakness ! I made an appt. with my regular doc for tomorrow morning to see if he can give me something besides Xanax since its not working at all. I add a half tab extra to my already 3 a day and I don't even get drowsy from it. No sense in taking too much of something thats already addictive but having no positive effect. So Linda - is it normal for you too to feel ok for awhile and then arrythmias several times a day for days, weeks? Thank you again - if you were here, I'd give you all a big hug. Warm regards, Lorie |
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marysue Member Posts: 166 |
posted January 29, 2004 09:11 PM
Lorie, We're all giving you warm hugs. I don't think there is a person on the board who doesn't feel great one day and the next day, has that feeling of dread and all the full-blown symptoms of MVPS. My doctor first put me on a calcium channel blocker and I went into tachycardia in his office using it. It did nothing to alleviate my symptoms after the initial week or so. He then switched me to the beta blocker, Tenormin. For right now, until you get back into the doctor, keep taking the Xanax at your regular intervals. I don't feel the relaxation that I felt when I first started it and wish I could since that was such a warm, relaxing feeling and my heart didn't bother me at all about 30 minutes after taking a tab. However, I know it is still working to maintain the calm. What is sounds like is that your medicine might need to be altered or changed to better help you. I always had worst episodes before my cycle and especially since I started going through early menopause in my late 30s. God bless you. I hope that things straighten up for you quickly. We're all in this boat together and believe me, we all have the worst episodes, along with all the fears and anxiety that accompany them. Keep us posted on your symptoms - sometimes just venting a little about them really helps. Don't worry about the major crying episode - my hubby has seen them all! And honestly, I really think that it does your body good to release that emotion. If I had a nickel for every time I have cried before work and wanted to just be "like everyone else" and not have these problems, I would be a wealthy woman! Better days! Mary |
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tigerlily Member Posts: 22 |
posted January 30, 2004 01:36 AM
I agree, we are all here with hugs and best wishes. We all have our days [and weeks] where things are terrible. I feel so bad right now that I can't be strong when my mom is going through much worse than I am, but she is handling things better than me. It seems crazy that something "not lifethreatening" can scare the daylights out of you.I hope things go well with the doctor today and know that we are thinking of you. Best wishes. |
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lindahazz Member Posts: 642 |
posted January 30, 2004 07:36 AM
Hey Lorie, cheer up Girlfriend, you're going to get through this. Yes, it's entirely normal to feel good one day and all hell breaks loose the next. I'm going through that right now. For months, the poundings were almost non-existent. For the past couple weeks they've been with me every single day. This MVP thing has a mind of its own. We can second-geuss it the best we can but it's still going to do whatever it wants to. We're not going to conquer this thing, we're only going to be able to learn how to live with it. The best coping mechanism we have is our attitude. There's no pill for that one, you have to do it on your own. Develop an attitude that helps you take back control over your life. You may not be able to control everything the way you like but you can get the upper hand by not letting it mow you over. Roll with the punches - don't let it take you down to the ground. You can do this. Stay calm, stay strong. ((((((HUGS)))))) Linda |
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opus88 Member Posts: 1731 |
posted January 30, 2004 11:07 AM
Been there, as have most of us. Miserable, ain't it!!! I wish we could give you a sure-fire way to get back to normal, but unfortunately it's just too complicated, and our bodies are all soooo different. Just to give you something to do to feel a little more in control, for the next week or so, eat ONLY the following things: * meat of any kind (incl. fish and poultry), but no sauces or even herbs/spices (salt is ok, but wait until after it's cooked - sea salt is best) * veggies (raw or steamed), but NO potatoes, sweet potatoes/yams, carrots, peas, beets or winter squash, and only small portions of beans * plenty of real butter (not margarine) and/or extra-virgin olive oil and/or Carlson's cod liver oil plenty of water Oh - you can have eggs, too, but not in place of the other stuff - use them as snacks or additions to your meals. I know this sounds extreme, but eat each of those things at EVERY meal. If you don't feel any better after a few days, it may not be for you - it really helped me, but who knows . . . it's worth a try. Good luck, and keep us posted! |
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Sheila Dinehart Member Posts: 11 |
posted January 31, 2004 01:39 PM
Please get your thyroid levels checked. Apparently my MVP/dsyautonomia were kicked off by this malfunction...mine is "hyperthyroidism" (there are a number of causes and treatments and there is corrolation to mvp with this sort of thing...)... radical weakness, panic attacks, tremors, faintness, heart palps/ irreg heart beats, and high pulse and blood pressure spikes are some of the symptoms...and terrible ANXIETY...a thyroid storm may bring on a heart attack or stroke...check your thyroid levels t4 and t3 ... That simple blood test, when I was in the hospital, brought it all into perspective. Men have this problem as well, though most often it effects women.
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lakota58 Member Posts: 155 |
posted January 31, 2004 07:30 PM
Gosh I love you guys. Just having you there to share our fears, hopes, ups and downs means more than I could ever put into words. I don't like sounding like "woe is me" all the time - and I don't mean to. I'm so thankful to have found this site and all of you - it helps more than you know (well actually, I'm sure you do know!). I felt kind of sorry for my PCP yesterday - he walked into the room and there I was sobbing and shaking like a crazy woman - he had a mixture of shock, tenderness and "oh crap..what's this?" on his face. I explained my fears and what has been going on and how I will be seeing a cardio physiologist on the 6th. He was very understanding and upfront about my test results that my cardio sent him. He reassured me several times that its not life threatening, though he did not have the results of the event monitor I wore for a month which was what diagnosed my arrythmia - but he said he had faith in my cardio and felt he is one of the best in the field and that I am in good hands (my cardio taught him in med school). He was also firm when he told me not to expect much from the specialist I was seeing on the 6th because there is just no meds out there to ever eliminate the symptoms, only alleviate them (made me think of what you told me Linda)and its very difficult to find the right one because the side effects of all can make the arrythmia worse. He too has some type of arrythmia but he said it does not cause him panic so he would rather put up with the arrythmia than the side effects of meds. Anyway, he upped my xanax and put me on Lexopor (10 mgs), a mood stabilizer. I felt better after I talked to him and the extra xanax helped keep me relatively calm today. I'm hoping in time that between the right meds to help alleviate the symptoms and talking with you guys, I will learn to deal with this way of life and come to know that it will not kill me. Thats the fear I need to work on. I found out too that I have "mild" regurgitation and my valves are still normal size. Now I just need to find out exactly what type of arrythmia I have - then I can start to try and learn more to see what I can do to help it and to deal with it. |
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tigerlily Member Posts: 22 |
posted January 31, 2004 07:55 PM
Lorie,i am glad that it sounds like your doc is supportive of you and the mvps, that is rare. I am glad that today was a little better for you. I know totally what you mean about not wanting to bother your family with any of this. Everyone always says how this is not life threatening but the episodes of palps and tachycardia are so scary then the anxiety goes up to make it worse. It seems like a neverending cycle! I also am just learning to get this under control, but I refuse to let it control me. I am glad for this site and the expertise of the "seasoned mvp'ers" who have already gone through these trials. best of luck with your cardio on the 6th. I hope you can find something to help. Warm wishes. |
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tskelton Member Posts: 13 |
posted January 31, 2004 11:23 PM
LAKOTA58 I have read your post IM sorry to hear what a hard time you have been going through. I was wondering have you had your sugar level checked when you have had blood work done. Im wondering if maybe it might be low. If so it could make you shakey and light headed. You might want to have it checked.God bless you and take care. Tina |
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lakota58 Member Posts: 155 |
posted February 01, 2004 03:56 PM
Tina - Yes, my sugar level was checked also. Came back normal. I really believe it is the combination of mvps (dysautonomia) and whatever arrythmia I have that is causing me so much grief. I have to say that my pcp and cardio ran very thorough tests, as far as I know. Stress thalium test, echo, ekg, blood work, holter monitor and event monitor - all within 2 months. But it takes forever to get appts. with the right docs and to keep trying new meds to try and find one that helps. My biggest problem is lack of internal strength when my body feels so out of whack - that is why I keep coming to this site because there are very amazing people here that give me hope when I read what they go thru and the strength and courage they have to keep going. Five more days and I should have some better answers about my arrythmia. Warm wishes to you all! Lakota |
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milkmommy Member Posts: 262 |
posted February 01, 2004 10:36 PM
Lakota, my heart is jumping just reading your post. I went through the worst flare-up last spring. I was on this board daily begging for help. My heart was pounding and skipping and I was so fatigued that I couldn't even sit up at times. I really thought I was going to die or at least never get better. My quality of life was at O and even my family was not enough to make me want to live if the symptoms did not improve. But they did. It lasted about 5 months and then got slowly better and now I am feeling better than I have in years. I wanted to point out to you that my symptoms got a lot worse when I was drinking a lot of water. It did not help me at all. I think that it made me dehydrated. I know that dehydration is the reason we need to drink so much water but too much can cause that same problem. I suggest you drink 6-8, 8oz glasses a day and stop. If i were you I'd stop all of those supplement too. If stopping them does not help you feel better after a few weeks then you can always take them again. Remember that when your heart skips and you panic it makes the whole thing worse. I started deep breathing, take a slow deep breath through the abdomen and then into the chest, hold it for a second and then let it out slowly. This always slows my heart rate down, even if sometimes it takes off again as soon as I stop. I do this for 30 minutes ( start at 5 minutes a day and build up) every day and have read that after a few months it would "produce profound effects." And it did. I feel so much calmer. It did take about 6 months to get here though and I expect that the benefits will continue to grow. One man I know with mvps did this along with good nutrition for three years and the symptoms have been slowly going away. I feel for you. I am not implying that you are causing this as it has a mind of it's own sometimes. Oh, one more thing. I recently started tiny amounts of amatryptaline and it has helped slow down my heart and calm me down. Karen |
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