Amantadine

[BogeyDog]

I recently switched from Sinemet (after 6 weeks with no improvement) to Amantadine for my continued lightheadedness. Does anyone else have this problem? Did Amantadine help? I'm waiting to see someone who specializes in dysautonomia to help with this constant state of dizziness, not just when standing from a seated position, but every minute of the day until I lie down. Anyone out there experiencing this as well? I don't have tremors but am unbalanced due to the state of my head!!!! Grrrr......🥶

[park_bear]

I take it you are taking no other Parkinson's meds at this time. Do you experience this lightheadedness sitting as well as standing? If you do not already have a blood pressure cuff you should get one and measure your blood pressure sitting, standing and lying down, morning and evening. This will help with your diagnosis. There are also non prescription measures you can take to mitigate this problem, but before doing anything it is essential to know your lying down blood pressure in the evening because this can be high and it is important not to aggravate it.

[Kingsdale in reply to park_bear]

My 80 y.o. husband's main suffering from P.D. is the dizziness. (I have a letter to BogeyDog with details about my husband's situation.) FYI - orthostatic hypotension is not the cause of husband's dizziness and his neurologist agrees it is not the cause. You mention there are non prescription measures to mitigate the problem and if they are not for treatment of orthostatic hypotension, could you please share them here ?

[park_bear in reply to Kingsdale]

Yes, Parkinson's can cause dizziness, which has nothing to do with blood pressure. I refer to it as vertigo to make sure it is not confused with the result of orthostatic hypertension. Vertigo is a type of dizziness that feels as though one or one's surroundings are spinning. Orthostatic hypotension actually causes lightheadedness which is not the same as dizziness.

To get a proper diagnostic workup for vertigo is necessary to get to a Hearing and Balance Center. In my case none of the usual causes were found and it was attributed to Parkinson's. For this vertigo I found Scopolamine travel sickness patches to be a lifesaver. On occasions when I felt the vertigo starting up I would apply it immediately and it would nip the whole process in the bud. Eventually my nervous system adjusted and I no longer suffer from this problem.

[BogeyDog in reply to park_bear]

In addition to my previous reply 😏 I saw my ENT doc who ruled out any inner ear disturbance. He sent me to physical therapy for "balance" issues which I found no relief. It definitely isn't vertigo. No nausea which is usually associated and I'm more lightheaded than dizzy. I feel like I'm drunk 24/7! Well, not when I'm lying down to sleep, thank goodness! But, that's the ONLY way I get relief. Next step is to see a specialist in dysautonomia and go from there.

[BogeyDog in reply to park_bear]

Yes, I've been very faithful at monitoring my BP. I have low BP and currently on Midodrine 3×/day for that which has regulated it. I'm in normal range in all positions. And, no. I'm not on any other PD meds.

[Kingsdale]

My husband is 80 y.o. diagnosed with PD about 18 mo. ago. On Sinemet. Main complaint is dizziness which started several yrs ago. Neurologist says symptom is related to the PD and no there is nothing he says (knows?) can be done for it. Dizziness not related to orthostatic hypotension which neurologist agrees it is not the case. Level of dizziness varies, sometimes worse than others. Lying in bed it's generally not bad. He can feel better when watching TV and being absorbed. If not for the dizziness, husband would be free to carry on with life but as it is, dizziness prevents him from doing many things he used to do so I've had to take over most of what he used to do. From all my reading/searching online for answers, I came upon vagus nerve and dysautonomia (sympathetic & parasympathetic systems) --> maybe the dizziness could stem from some specific malady in the autonomic nervous system--> so recently I bought the "Vagustim" device (auricular vagus nerve stimulation) : vagustim.io/?rsltid=AfmBOor... but have not yet started using it on my husband so I have no idea whether it's going to be helpful or not. I'm also considering the SYBMYX PD care device as its treatment involves the vagus nerve.

Re. amantadine -- you state you recently switched from Sinemet to Amantadine for continued lightheadedness -- it sounds like this was not beneficial ? -- you state you will be seeing someone who specializes in dysautonomia to help with this constant state of dizziness --> I would be pleased to know details what this specialist in dysautonomia says about it and what he/she does for you. I hope this will solve the dizziness problem for you.

[Kingsdale]

reply to Bogeydog

My husband is 80 y.o. diagnosed with PD about 18 mo. ago. On Sinemet. Main complaint is dizziness which started several yrs ago. Neurologist says symptom is related to the PD and no there is nothing he says (knows?) can be done for it. Dizziness not related to orthostatic hypotension which neurologist agrees it is not the case. Level of dizziness varies, sometimes worse than others. Lying in bed it's generally not bad. He can feel better when watching TV and being absorbed. If not for the dizziness, husband would be free to carry on with life but as it is, dizziness prevents him from doing many things he used to do so I've had to take over most of what he used to do. From all my reading/searching online for answers, I came upon vagus nerve and dysautonomia (sympathetic & parasympathetic systems) --> maybe the dizziness could stem from some specific malady in the autonomic system--> so recently I bought the "Vagustim" device (auricular vagus nerve stimulation) : vagustim.io/?srsltid=AfmBOo... but have not yet started using it on my husband so I have no idea whether it's going to be helpful or not. I'm also considering the SYBMYX PD care device as its treatment involves the vagus nerve.

Re. amantadine -- you state you recently switched from Sinemet to Amantadine for continued lightheadedness -- it sounds like this was not beneficial ? -- you state you will be seeing someone who specializes in dysautonomia to help with this constant state of dizziness --> I would be pleased to know details what this specialist in dysautonomia says about it and what he/she does for you. I hope this will solve the dizziness problem for you.

[BogeyDog in reply to Kingsdale]

I'm sorry to hear your husband is suffering from this as well. Finding a local doctor who specializes in dysautonomia has been difficult. I'm in S. Carolina and will have to go to either Atlanta or Florida to the Mayo Clinic. I'm still researching that. My neurologist is assisting in the search to make a referral. I've only been on the Amantadine for several days and will give it a few weeks to see if I get any relief. Like your husband, I've given up so many things. I'll be 62 on Thursday. I won't drive so my independence is gone and I've given up a lot of social things that I enjoyed doing. My husband has been wonderful and thankfully I have a large circle of friends who help out. So....here's hoping for a miracle! Good luck to you and your husband.