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Posted 1/29/2011 4:39 AM (GMT 0)

I am new to this forum and have actually never done anything like this online, but I'm desperate to know if anyone else with PD has experienced this.  I was diagnosed with PD 1-1/2 years ago.  One of my main symptoms has always been extreme head pressure, which makes me feel like someone is pressing down on the top of my head and the back of my head is going to blow out behind my ears.  It can happen when I'm on or when I'm off.  It's extremely uncomfortable and is also associated with neck stiffness and often causes weakness and numbness in my right side, which is my affected side.  The neurologists said they haven't heard of this.  One said it may be a manifestation of migraines, another thought it was due to depression.  I also have terrible neck and head spasms in the cold weather.  Has anyone else had this?  I belong to a support group and I've tried researching on line and in books and I'm coming up empty handed. 

Thanks for letting me share.  I'm not asking for advice, just to know that I'm not alone (though I wouldn't wish this on anyone).

Posted 1/29/2011 3:11 PM (GMT 0)
poetry girl,If no one has ordered an m.r.i. for you .It's time to get one.Has anyone on this forum experienced similar symptoms????????If so what was the cause ,and treatment.Wish you the best,and I hope you hear from forum members.Ed
Posted 1/30/2011 5:14 PM (GMT 0)
Poetry,yes I am dealing with what sounds like same symptoms headaches back of head and top neck is allso stiff all of the time. It has been going on for about 6 months and now is more freequant. I just had appt. with my nuero mov spec. about these symptoms.He says it is the Parkinsons i thought it was the stalevo c/L or the amantadine that i am taking. You are not alone!!!!!!!!!!!! For me a loratab 7.5mg allso for my spinal arthiritis does the trick. For me its better than park meds!!!!If you would like to talk just know you are not alone im here :)
Posted 1/30/2011 8:48 PM (GMT 0)
Thanks to both of you for replying. I had an MRI prior to diagnosis in early 2009 and then again July of 2010 when I was admitted for 3 days with symptoms of stroke, which was ruled out. It just feels sometimes so bad that I don't know how I can still be around. It even puts pressure on my eyes. If I know it's just from PD, I guess I can live with it. I just didn't expect to feel so crummy so soon. I'm glad to know I'm not alone, even though, as I said before, I don't wish this on anyone. I also have cervical spine stenosis - maybe I need to look into this.
Posted 1/31/2011 12:17 AM (GMT 0)
Poetry can i ask what PD meds you are taking?My nuero thinks increasing my dose of Stalevo may help these symptoms that we are talking about,im not so sure yet.I have not responded well to alot of the pd meds considering DBS.
Posted 1/31/2011 1:12 AM (GMT 0)
Hi curepd, I'm on Sinemet 25-100, ropinirole, amantadine, comtan, lodosyn, for PD and lexapro for depression. I was on Azilect once/day, but went off it when I found out it shouldn't be taken along with lexapro. I see my neurologist tomorrow, so maybe he'll increase the Sinemet. The meds have definitely helped my walking, and have decreased the tremors, but all in all, but they don't last very long. I know depression is definitely a factor here, but I don't think it's responsible for all my symptoms.

When were you diagnosed, since you're considering DBS?
Posted 1/31/2011 5:25 PM (GMT 0)
Hi Poetry, Yes i was diagnosed in 2006 at age 39.I was on azilect early on but did not responed well to the drug.My symptoms are efecting the left side of my body with severe rigidness and tremors are moderate,but the latest symptoms witch are the most difficult are the headaches in the back of head and pressure and allso the rigidness in the neck.My nuero has talked about DBS but i will hold as long as i can it is brain surgery.Do you have someone who is helping you through this?If you need to talk when you are down you can find my e-mail on my profile.Good luck with nuero today keep me updated :).
Posted 1/31/2011 11:17 PM (GMT 0)
Hi Curepd,
The azilect did not help me, either. The doctor said it's actually ok to take it with the antidepressant, but he told me to go off ot it anyway since it's not helping. He's a movement disorder specialist, but he said he has never heard of the head pressure symptom before and he is baffled. He says it is not from the Parkinson's, but he doesn't think it's a headache problem, either. He is going to try injections in my neck to see if the pressure's relieved if my neck muscles are relaxed. It constantly feels like my brain is bobbing up and down in water - that's when the pressure isn't too bad. When it gets bad, I feel like I'm going to pass out or something.

I'm really sorry to hear you are going through this, too, especially at a young age. Take care and thanks for answering!
Posted 2/28/2011 2:54 PM (GMT 0)
Hi Poetrygirl, hello from the UK. Whilst I think it interesting and of value to hear and know what symptoms and meds our fellow movers and shakers have and take I always temper it with the knowledge that we have a condition that is inique to each and every one of us. This applies to the way that it affects us, progresses, responds to the same treatment indifferent ways, and is as individual as the people in which it resides. What drug helps one may hinder someone else. This is not a criticism just a cautionary word.
I also find it interesting that neuros over there seem rather quick to lob people onto medication as soon as dxd. This is not necessarily the case over here. I didn't start meds until 9 month after dx with neupro patches and the sinimet plus 12 months after that. I am 5 years post dx and still on the same dose. BUT THAT IS ME. Many friends are further down the line after a shorter time.
With regard to your symptoms a relative of mine had in particular the downwards pressure on his head and neck and this was identified as stress emanating from pressure at work. When he took early retirement they disappeared. It may of course have other manifestations.
To change the subject, - poetry - writing or reading or both? Maybe we couldstat a thred of its own?
keep taking the tablets folks.
The Bear
Posted 3/17/2011 6:51 AM (GMT 0)
Hi, I was diagnosed with PD in Nov 09. I have suffered from migraines since 1990. I have had 6 surgeries to try and solve the problem, but it didn't help. I too have the stiff upper neck and at time pain that seems to come from behind the eyes. For the last year I have been getting injections in my neck, muscles on the side of my head and my forehead. These have helped, but I still take Imatrex and Vicadin for the pain. I take simemet and ropinrole for PD. I hope your injections help. FatherGuss
Posted 3/25/2011 3:46 AM (GMT 0)
Hi Poetry Girl- I just started this blog tonight-the first time ever to do anything like this. I was just going to take a look and then go to bed but I was so struck by your note and how much stamina and courage you must have to hold your "head up" when there is so much pain going on inside of it. Anything t hat involves my brain functioning directly terrifies me. I don't want to lose the awareness of what is going on around me or to connect with the people I love. I'm dealing with a lot of cognitive memory loss and confusion and a variety of hallucinations. Losing control of the body is one thing but of the brain it is a while other matter.
For a less scary and debilitating neck and spine problem, I did go to an orthopedic surgeon and then to the physiatrist he referred me to. Shots, physical therapy, craniosacral therapy-my favorite because you don't do anything but lie there and they just put their hands in various positions along your body . When I got up I felt renewed and pain-free. Also have done meditation to relax but it's hard to get to an inner stillness in the midst of a lot of pain and discomfort. None of it lasted but I was happy to go from one reprieve to another.
I really hope you find some relief.
Where are you from. I'm from NYC and would be glad to send you any names if you would like.
Good luck-
Penparis
Posted 4/23/2011 3:25 AM (GMT 0)
Hi all,
Thank you for your replies and suggestions, mostly for your support. I haven't replied till now because we've been busy with planning our daughter's wedding and it's been crazy here!

Four weeks ago, I had my first botox injections in the neck. It has loosened up the stiffness somewhat and helped the head pressure, but it didn't help as much as I had hoped. The doctor warned me that the injections could cause my head to feel heavy, and this is what happened. My neck is so sore, especially when sitting in front of a computer 8 hours a day at work. I find myself holding my head for support and resting my head against the back of my chair. I am much more aware of the pain now as it is spreading to my upper and mid back.

Semperfiforever and penparis, is this the type of injection you had, and have you or anyone else experienced this problem?

The Bear, in answer to your poetry question, I write poetry. It's helped me cope with PD and with my mom's alzheimer's disease and eventually her death last November. The ideas usually come to me in the middle of the night, so I keep a pen and paper on my nightstand - otherwise, I would forever lose my thoughts.

Penparis - I know exactly what you mean about the fear of losing awareness. When the head pressure is really bad, I almost feel like I'm losing it. I'm afraid it's going to start really affecting my memory because I find that I can't concentrate or think clearly. I would much rather have a weak body and a strong mind, than be physically well and unable to remember. It scares me and sometimes takes my breath away when I think about it. But I guess I just have to take one day at t time and not worry about what may never happen.
And since you asked, I'm from Ohio in a suburb of Cleveland.

Thank you all again for your support and suggestions. I wish you all well and please know that you have my support, too.
Posted 6/1/2011 7:05 AM (GMT 0)
Hi. I get the same symptoms. Have not read all thread yet, will post more when i have
Posted 6/1/2011 9:50 PM (GMT 0)
Hi all. OK read through the posts. I'm a bit puzzled by neurologists who are baffled and not heard of this stiffness ? Seems common to me. Dxd in 2000 at 40. My symptoms: extreme head pressure as Poetrygirl describes. Total rigidity throughout my entire body at night. Weak limbs to the extent that I cant open my eyes. Fell out of bed last night around 3pm face down with my right arm across my chest for what seemed like an eternity. Eventually managed to press myself up. Hard swallowing and sometimes breathing. That said and done life is fantastic in between these horrendous off periods. I have a super wife who looses it with me on a daily basis, 5 children (2 married) & currently 3 foster children, 2 goldfish and a dead maybug in the garage! I am fearfull of DBS so press on with 2 x 125mg madopa every 3 hours and CR mirropexine in th night. I wake every morning and conciously decide to believe for the best that day. Thats not to say I dont have my dark moments but one thing I have learned: There is no neutral, you cannot be indifferent to this thing. So I am actively positive or else i am depressed. I hope every day for a miracle and or breakthrough in medicine! Thank you all for the info. Bwell2day.
Posted 6/2/2011 7:18 AM (GMT 0)
btw sorry i cant spell very well :)
Posted 6/5/2011 4:19 PM (GMT 0)
Hi bwell2day,
My neurologist isn't really puzzled about the neck stiffness - more the head pressure., although he did say he sees less neck stiffness than stiffness of the extremities.

I'm wondering now if the head pressure is possibly a wearing-off symptom.- this was suggested by a neurologist who spoke at a support group meeting Although it does also occurr when they are not wearing off, I'm noticing these days that it seems to be worse when it's time for the next dose. The pressure is associated with neck stiffness, but the botox injections that did ease up the stiffness a little, did almost nothing for the head pressure. So I'm trying to take the meds a little closer together and will have to wait and see if it works.

Does anyone who experiences this head pressure also experience numbness and weakness of the arm and leg on one side or both sides along with the pressure? This concerns me somewhat, but doesn't seem to worry the neuro.

Have a great day!
Posted 8/20/2011 3:28 PM (GMT 0)
I am very happy to report that I have discovered, I believe, the cause of this head pressure. It seems to have been migraine related. I was at my wits end a few month ago and made an appt with a physical medicine physician at the hospital where I work. My neck was so stiff and the pressure in my head was so bad I found myself just crying at times. It literally felt like my head was going to explode. One doctor a year or so ago had suggested migraine, but felt because it was pretty much a daily occurence that it was not a probability, even though I had migraines all my life. This physician repieated an MRI just to make sure it was nothing of concern, but it was, as he felt it would be, negative. He put me on daily topamax to preven migraines, heat packs and physical therapy, including neck traction to relieve the extreme tightness in my neck muscles. What a difference! For the first time in 2 years, I am able to move my neck freely and I am a totally different person. I am relieved of this extreme pressure and neck stiffness. So I assuming that the Parkinsons meds, which are so chemically altering, just aggravated my migraines to an extent that they were occurring every day, but manifesting themselves in a different way - I don't know - I'm not a physician. All of the other physicians were totally baffled by this. So if you are experiencing head pressure, it might be worth it to look into the possibility of it being migraine related.

I can't tell you what a difference this has made! The doctor who figured it out told me he couldn't believe how stiff my neck muscles were. So all this time, all I needed was to treat the migraines. What a relief!! Thank God!

I wish you all well!

Poetry Girl
Posted 8/28/2011 6:31 AM (GMT 0)
hey poetry girl, after reading your post i just have to reply, i hope you can take my advice with an open mind. I would urge you to contact igenex labs and request a test for lyme disease. I know this is the parkinsons forum and i mean no disrespect to anyone, i just know that when i was bitten by a tick and diagnosed with lyme two years later my number one symptom was neck stiffness with migraines, two hallmark signs of lyme. I would urge you to find a lyme literate doctor, look on lymenet.org. The reason i suggest igenex labs is because the test you would get at your primary care is inaccurate. Please watch Under our Skin on hulu, an oscar nominated documentary on lyme disease which discusses how many people are sometimes misdiagnosed with parkinsons when it is actually lyme. Again I mean absolutely no disrespect, i wish better health for all of you. Please read my post with an open mind, and check out the lyme forum on this site to see if any of your other symptoms match lyme.

Post Edited (wide_eyes) : 8/28/2011 12:28:36 PM (GMT-6)

Posted 9/13/2011 8:35 PM (GMT 0)
Brand new to the world of PD diagnosed about a year and a half ago. knew about support groups but have been in denial i suppose. cant even mow my lawn anymore...38 yo. head pressure. i have it...no pain just really uncomfortable pressure. sensitive to light. pressure is localized to my forehead and the very crown of my melon (head). i take car/levodopa. kinda helps. no insurance so have to take what i can afford...Now i know Im not alone. embarrassed to leave the house. embarrassed when my son see's me shake. just wanna stay in my room. I need help. i just wanna rock hunt with my son and mow my friggin lawn again. from the looks of things I am now in the really ticked off about it stage of grief. gotta get outta that.....not sure what to do next. Any advice or tough love would be welcome.
Posted 9/14/2011 1:36 AM (GMT 0)
I had sudden onset hearing loss about 6 years ago. Went everywhere, even th Mayo Clinic. No one could figure it out. I even had exploratory middle ear surgery on my left ear (60% loss) but nothing wrong. Now I am wondering if it was the very beginning of PD. My ears are always wanting to explode from the pressure, not to mention clicking and ringing. On xanax when it gets too loud.....
Posted 9/14/2011 1:37 AM (GMT 0)
Oh, diagnosed with PD in April, 2011
Posted 9/29/2011 2:03 AM (GMT 0)
Hi mrfinis please email me I might be able to help re meds
The Bear
Posted 11/1/2013 3:02 AM (GMT 0)

I have been on levododpa/carbadopa about two years, which I take every 4 hours.  about 15 minutes before each dose is due, I always get the same set of symptoms: pressure in stomach, pressure in head and sinuses, sinus drainage, difficulty in breathing.  (None of these are severe, just very uncomfortable.) Up until two months ago, there were three additional places of pressure to add to that list: back of neck, throat, and right ear. However, I no longer experience pressure in these last three places, and I think I know what I've done to help: every morning I feel so rotten that as soon as soon as I take the first dose, I sit in a chair for 30-45 minutes until the medication kicks in. I decided I wanted to do something positive during that time to counteract the unpleasantness. So, two months ago, I started doing a gentle scalp massage each morning. Using gentle pressure with my fingers, I start with my forehead, work up to the top of my head, up the sides, down the back, and down my neck.  Since starting this massage, the neck, throat and ear pressure have never come back.  Maybe this could help others. (If anyone tries it and it helps, please let me know.) Now, I'm looking for non-drug ways to stop the stomach and sinus pressure.  Any suggestions?

As a side note, I'd like to mention two books that, although not specific to Parkinson's, have been very helpful to me. The first is The Trigger Point Therapy Workbook, by Clair Davies. It's a self-treatment method (massage) for sore muscle pain relief when the pain comes from muscle knots caused by overuse, strain, imbalance, etc. It helped me relieve a lot of muscle pain even before I got Parkinson's. I can't help but think that these knots are also being created when our lack of dopamine creates muscle tension, rigidity, and spasm. I wish some enterprising young medical researcher would apply what's in this book to Parkinson's.

The second book is Facial Reflexology: A Self-Care Manual, by Marie-Frence Muller, M.D., N.D., Ph.D. I don't know if this method helps all the medical conditions that the author states. However, I do know that it is extremely relaxing, and I do it almost every day.

Posted 3/8/2015 3:21 PM (GMT 0)
HI, just got diagnosed for Parkinson 3 months ago at 34 years old.
So far im on no Meds.
Symptoms:

Tremor when I move my arms(not the classic shaking at rest)
Severe preassure at the back of head as if someone is grabbing it
sometimes I'm limping after well rest I walk a lot straighter
Internal twitches in my legs the other day my husband thought he felt a heart beat on my arm.
Coolness sensation on my feet followed by buzzing type rumbling bubbling sensation that you can feel internally but not feel.
when I swallow my throat clicks.

Had a Datscan in New York
Had a Mri done and they found 2 white matter lesions in my brain , 6 months later one of the lesions was very slight follow up MRI with contrast found the second lesion was almost not visable , one year follow up later only one lesion left and its smaller by 1mm from7mm to 6mm. They were checking obviously for MS.
I also had a normal evoked potential and Emg studies.
Found to be abnormal. which supports diagnoses of Parkinsons Disease.
What I don't understand is the preassure that I feel at the back if head and sometime sharp pinches does not
make me think it's Parkinsons. My writing is perfectly normal.

what do you guy's think it could be Lymes disease , Parkinsons or Something else
Posted 3/8/2015 3:24 PM (GMT 0)
HI, just got diagnosed for Parkinson 3 months ago at 34 years old.
So far im on no Meds.
Symptoms:

Tremor when I move my arms(not the classic shaking at rest)
Severe preassure at the back of head as if someone is grabbing it
sometimes I'm limping after well rest I walk a lot straighter
Internal twitches in my legs the other day my husband thought he felt a heart beat on my arm.
Coolness sensation on my feet followed by buzzing type rumbling bubbling sensation that you can feel internally but not feel.
when I swallow my throat clicks.

Had a Datscan in New York
Had a Mri done and they found 2 white matter lesions in my brain , 6 months later one of the lesions was very slight follow up MRI with contrast found the second lesion was almost not visable , one year follow up later only one lesion left and its smaller by 1mm from7mm to 6mm. They were checking obviously for MS.
I also had a normal evoked potential and Emg studies.
Found to be abnormal. which supports diagnoses of Parkinsons Disease.
What I don't understand is the preassure that I feel at the back if head and sometime sharp pinches does not
make me think it's Parkinsons. My writing is perfectly normal.

what do you guy's think it could be Lymes disease , Parkinsons or Something else
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