Help! I'm so dizzy!

I have had worsening dizziness since my PD diagnosis last December. Lately I've been very nauseous, too. All the time. Being treated for orthostatic hypotension, (midodrine 5 mg 2 x day), but when I check my pressure standing, it's normal now. When I first started the carbidopa levidopa it was like a miracle had occurred. Now, even though I'm taking more doses (3 tablets 25-100 mg) six times a day, I can barely walk. I have to take Linzess, Paxil, Remeron, and Xanax, all of which cause dizziness. I take Comtan 200mg with each Carbo/Levo dose as well. Zofran does nothing. I also suffer with spastic bladder, and as soon as I'm drifting off to sleep, I start to go! And by then I can't get out of bed in time, last night I couldn't move at all. My poor husband! My yoga classes are impossible and I won't be able to drive soon at this rate. I have thrown up everything I've eaten today, Somebody please help! I can't live like this!

52 Replies

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  • Sorry to hear about your condition. I'm definitely no doctor, but two things strikes me when reading your post :

    - you really take a lot of different medications, all aimed at the same symptoms. Maybe too much for your organism to process simultaneously ;

    - anxiety, more than anything else Parkinson's included, can be the root cause of a large part of your physical symptoms. It feeds on itself.

    Take care Clara

  • I know I'm taking too many drugs, but I can't get off some of them now, not without really going crazy, and, well, anxiety? My contact companion! What to do? (Don't say "mindfulness," I've tried to meditate for hours and it's just out of control!)

  • I agree with Xenos, sounds like you're over medicated, especially for such a recent diagnosis. One thing that you might do is Google "NPH". There's 3 main symptoms: 1) Balance 2)Gait 3) Incontinence. There's a test and x-ray your Neuro can do to determine if it's NPH. It sometimes resembles PD. If it is NPH there is a surgery for it.

  • It happened to a good friend of mine : 3 years under L-Dopa. Feeling worse by the day, serious suicidal thoughts. He finally went to a knowledgeable hospital, was diagnosed Normal Pressure Hydrocephaly, undergo surgery and he is back looking like 20 years younger...

  • Thanks for replying. Hopefully there are a few people on here that may benefit from this information.

  • I've had many MRIs, and no one has said anything about this. One doctor did say possible MSA...

  • My husband gets extremely dizzy from time to time. When he falls, he says it feels like someone takes hold of his shoulders & throws him down. He has learned to sit down immediately when he feels this way now. He will sit down on the floor right where he's standing. It was so bad, we didn't know what we would do if it continued. He has positional blood pressure with dizziness too. Like when he gets out of the car, he might/might not be so dizzy that he has to hold on to the car for a few seconds til it goes away.

    Parkinson meds cause dizziness, & I think his neck muscles get strained because he holds his head forward & falls asleep in his chair that way too. PD causes muscle stiffness too. He also takes blood pressure meds & a water pill, both cause dizziness.

    Still he doesn't always have extreme dizziness (my term for it)

    I'm into Trigger Point therapy & checked my book, "The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief", 2nd Edition which can be purchased used on Amazon for a low price.

    There are trigger points in your neck that can cause extreme dizziness, make words dance/move across the page as you try to read, & a few more things. He had most of these symptoms.

    Deep stroke massage to those trigger points relieved his symptoms.

    I found similar info online & pasted the link here: fibrodaze.com/trigger-point... Scroll down the page to find illustrations of the neck muscle that might be causing your problem.

    Here's a couple other things that gave him relief. They might or might not help you. Drink more water/fluids, and his family Dr. reduced the strength of his blood pressure & water pills in quarters down to 1/4 of what he was taking. (His blood pressure isn't very high so this was helpful). He has food sensitivities too and needed to be more careful about eating gluten and dairy. (not sure if that contributed to dizziness or not)

    His symptoms are ever changing, when we figure one thing out, another starts up. I've done so much detective work that I get overwhelmed with information. I don't know if anything I've written will help you, but once his trigger points were massaged, he found relief quickly. That muscle is near an artery, you don't want to massage the artery. To find the muscle, he was told to lay down on his back, lift his head, and feel for the muscle. It should pop up.

    Deep stroke massage is not normal massage. Basically, you press down on the trigger point & move your finger or thumb, etc. down, always the same direction in short strokes, you are pressing down the entire time. Lift your finger up, go back to trigger point, press down, and again do the short strokes in the same direction. Repeat several times, or as long as you can stand the pain. (strokes could be up, down, to the side, but always the same direction)

    I apologize for the length of my post, and hope you can understand my directions. It's early morning here, 2:30 am, and I was on my way to bed when I saw your post. Again, it's possible that none of this will apply to you.

  • YES. Neck massage helped alleviate dizziness one of my primary PD symptoms. Continue to keep the neck strong with neck shoulder upper arm exercises daily.

  • Thank you! I'll try it!

  • Thank you so much for all the information. My neck muscles do indeed bother me very much. It would be "funny" if all this dizziness is caused by such a thing!

  • Going by my hubby's experience, the massage should help you. I hope you are able to see a neurologist that specializes in movement disorders like Parkinson's.

    This website is extremely helpful. Checkout "Learn Online over 40 Seminars" Parkinson's Disease Foundation.

    pdf.org/

    As far as Trigger Point Therapy, which usually can be self-administered, it's amazing so many problems can be caused by trigger points, even carpal tunnel syndrome; sometimes we think we have sciatica, when massaging trigger points will take care of the problem. In a few days, I got rid of severe pain in my derriere, piriformis syndrome, by using trigger point therapy. Trigger points aren't always the cause of these problems, but can be.

    I hope you find relief soon!

  • Trigger points can cause urge incontinence too. Again, might not be your problem. Those can be embarrassing to massage. I suggest you try adult diapers until you find a solution. I think you will be more comfortable than trying to rush to the bathroom.

    pelvicpainrehab.com/low-ton...

  • That explains why halfway through the massage I have to take a break.

  • Spastic bladder, using Urgent PC stimulation, cathing, and Trospiam...

  • When I said adult diapers, it was like 3am. I should've said something like Depends. You can try them first; get a free sample:

    depend.com/products/get-sam...

  • I'm no Dr but I think you're over-medicated. Maybe you're dehydrated too? Check for low blood pressure. The last two we're causing dizziness and fainting in me.

  • I know for sure I'm overmedicated, but I can't stop now! Also probably dehydrated, too, but with my bladder problems, I've been told to limit my fluid intake after 6pm! And still I have to pee all night!

  • Dehydration is worse than adult diapers. (Full disclosure: I'm not using adult diapers.) Dehydration leads to constipation for one thing which can really make a Parkie's life hell. Re the meds.l, maybe ask your pharmacist if they can do an audit of all your meds, including over-the-counter, vitamins and supplements to see if you're taking unusually high doses and if you're there are possible conflicting interactions between any of your meds.

  • Already a huge problem. Linzess. The meds for my bladder will cause consitpation too. Lovely.

  • Are you on Sinemet?

  • Yes. Generic.

  • Did you get your blood pressure checked? Mine has dropped like a stone so my GP has taken me off the 2 pills I was taking for hypertension. This needs to be done slowly so no dramatic effects yet but its worth a try.

  • No luck with the dizziness taking midodrine, which is supposed to raise blood pressure...

  • Dr. Timothy Hain, Chicago Dizziness and Hearing is a wonderful neurologist. Please know that a PD diagnosis is akin to a garbage can everything gets thrown in. Misdiagnosis is not uncommon. I'd get another opinion.

  • Funny, after seeing so many doctors, it was my husband who Googled my symptoms and discovered what I had. He told the doctors, who only confirmed his suspicions!

  • I also experienced nausea and have lost about 7-10 lbs not wanting to eat anything. My neurologist cut down my dose in half and I only take it morning and afternoon. I have to say it dies improve my stamina and strength when playing tennis.

  • Don't you have problems with down time? If I'm late by even a minute things become unbearable!

  • I get dizzy when my c/l dose is too high.

  • Hi Clara,

    It's scary all this stuff, you are not alone. Just when you need your doctor, he/she runs out of answers. Thank God for the Internet. Can you imagine running from door to door searching for an answer? :-)

    All I have to offer, as a fellow searcher, is my limited experience. I am 3yrs since dx. My Neuro told me 1. Her meds would help the symptoms and 2. Decline was inevitable . I now do not agree with either statement. She has recently declared herself 'redundant', although we are still friends.

    Give yourself a couple of hours to ferret round this website. It charges a small fee after 2 free days.

    fight-parkinsons.org

    There are several suggestions as to alternatives. I went with Amino Acid Therapy. It is expensive; around $3 - $4K up front, then $50 per week for meds (with my doc.), but it seems to be working. It is based on work by a Dr. Marty Hinz: he has patients going back 10yrs who are ok. I'm sure there are other systems that work also, but I think my life is worth more than the price of a 2nd hand car . :-)

    This is not just a PD scenario; cancer has the same problems. Check out chrisbeatcancer for dozens of testimonies of cancer survivors, it should give you hope. My life is good now; I still have mild symptoms, but they are not progressing as far as I can tell. I intend to try Chris's regime with the hope of shaking the PD altogether.

    Ps my amino Doc. Is Ron Cargioli of Indiana. I don't want to go for a link as it often wipes my text if I leave the page. Google should get you Ron and Chris no problem.

    Hope this helps.

    God Bless

  • Thank you so much!

  • Hi Clara,

    I so understand what you are going through! A friend of mine a few months ago suggested ginger supplements. I take 500 mg a day with ginger reducing my dizziness, I have not had any falls in the last few months (yee-yeah!!!)

    The other that has helped when you are feeling better, is cycling. I have been cycling in the local gym for Parkinsons Cycling and it has made a difference-i walk with a staff instead of a cane which has helped the moving forward with arms and legs mindset.

    Praying for God's comfort and mercy for you and all (as we all need it!)

  • Thanks for your advice, and keep those prayers coming, would you?

  • Good luck sorting out all the various responses here - you are going to have to exercise some discrimination.

    You are taking a total of 1800 mg of levodopa daily in the form of C/L. I started suffering nausea at 600 mg daily. Best to cut back on the C/L if there is any way you can do so.

    Yoga is really important. If you can't get to class do it at home. Daily.

    I agree with the others you are taking too many medications. Must you be taking all this: paxil/remeron/xanax? As you mentioned meds have undesirable effects and under this circumstance hard to know what is causing the dizziness.

    Finally, are you checking your supine BP? OH and SH (supine hypertension) tend to go together.

  • Was diagnosed with orthostatic Hypotension along with Parkinsonism but with midodrine 5mg 2x day in the am I no longer have the low numbers, but the dizziness gets worse by the day. Any lower on the C/L and I can't move...

  • Consider adding an MAO-B inhibitor - azilect, xadago, or selegiline. That will make the C/L more effective so maybe you can take less. You could also try Madopar which is said to be a more effective way to get levodopa in.

  • The azilect made me so dizzy!

  • As others have said, you seem to be taking too many drugs, and some very high doses. Some look as though they shouldn't be used together.

    Check that the Neurologist who diagnosed you is a movement disorder specialist. If so s/he should be able to confirm the CL dosage (and warn you about clashes with other meds.

    I think you should also go back for a review with the doctors who prescribed all the other things. If that's not possible, at least discuss it with your dispensing Pharmacist.

    As you are newly diagnosed you need to be exercising.

    Good luck

  • All my doctors are "specialists" which means they say they "don't know nothin'!" My psychiatrist has me on paxil, xanax, remeron, and now wants me to take another, rexulti. He's already tried welbutrin, lexapro, cymbalta, trazodone, etc. I can't get off the paxil, which I've been taking for 20 years, and I guess it's me and xanax til the end of time. Urologist will have me on Trospiam and cathing. Gastro put me on Linzess and I will swallow a Smart Pill later this week. Neuro wants me to take Carbo/Levo, Comtan, steroids, azilect, gabapentin, blah blah blah. I'm certain there are drug interactions, but what can I do? One doctor will say, "I'm not a (blank) specialist so you'll have to go to another doctor. They don't know between them what is hapenning. I'm sicker than ever! I can't go to my yoga classes anymore, I'm trying desperately to get off as many drugs as possible. They all "May cause dizziness," I'm falling all over the furniture, and I'm more depressed and stressed than ever. Oh well, that's my rant, thanks for listening...

  • I understand. My dad is having a similar problem. They keep sending him to all kinds of specialists but noone is helping him. Do you have a regular GP or internist that you can talk to, tell them it's an emergency and/or go to the emergency room. Mate sure you give them a complete list of meds and supplements.

  • Oh dear. If your doctors are contradicting each other I think I would make an appointment to see your local Pharmacist. Take a list of all the meds you are taking, with the boxes and instruction sheets. Maybe s/he can at least advise you about normal doses, and best time of day to take each med.

  • Great idea. Thanks.

  • I agree that you seem to be taking too many meds. You said the carbo/levo was like a miracle that occurred when you first took it. Did your doctor prescribe just 1 pill when you were first diax? I guess he might have since now you are taking 3 pills six times a day. That seems way too much. It's probably why you are nauseous. If 1 pill was working, why take more? Maybe you got more symptoms. I agree that you should research on the internet for more information. It is so helpful. The main thing you should begin this week to do is exercise, exercise, exercise. Exercise is medicine, the best kind of medicine for PD. Make it a habit. Start by stretching often. Find a Pedaling for Parkinson's class in your town (they are found in YMCAs). Or find a Rock Steady Boxing class. Good luck.

  • I am "going down" and can't move again, like I was before my diagnosis, and one Neuro says more C/L and another says take the same dose, but with Comtan. Now I'm just dizzy and can't move and I pee in bed all night!

  • Read the reply from Xenos to my reply above and get to your doctor and see if it could be NPH.

  • Clara, here is the url for NPH that @laglag has mentioned:

    webmd.com/brain/normal-pres...

    Increased frequent urination is a symptom. I would start trying to solve that problem. How do you get any sleep? I am sorry you are having so much trouble. Make a doctor appointment as soon as you can to see if this is your problem.

  • Thanks hopedope. I was away from home & wasn't sure how to link from my phone.

  • Sleep? Elephant tranquilizer helps. I have been on remeron for a month or so. got up to 30 mg, then realized I can't move at all, night into morning. I used to be on trazodone but I'd sleep right through pee time... At one time I was on amitriptyline and that helped, but "they" told me that wasn't a good idea, with the paxil, I guess (serotonin syndrome). The remeron doesn't seem to be doing much of anything, but then again, nothing does. Somewhere along here someone said he uses amitriptyline and it works for him. I can't find an anti-depressant that works for me, and I think paxil may be doing more harm than good, but I'm afraid I'll never be off it.

  • You are taking a lot of medication that produces dopamine in the body. When too much dopamine builds up in the blood system, it causes nausea. I take TIGAN 300 mg whith each dose of C /L This usally helps as Tigan is an anti-emetic .

  • More dizziness...

  • Re: carbodopa-Levi:

    I too was taking 6-9 pills/day

    I switched to ER C/L

    It's a steadier flow of dopa

    Where the IR ( immediate release)

    Is an overdose immediately & then not enough

    I hope this helps

    Be well

  • Try onsendatron for nausea. I also find Pepto-Bismol lozenges (over the counter) very effective.

  • Thank you!

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