LymeNet Flash: Anyone with constant head pressure/ pain actually eliminate the head pain?

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Posted by SisterSue2 (Member # 5484) on :

I am really struggling with constant head pain/ horrific pressure (and have for 17 months now) and I have no idea how to help this symptom - it's awful!!

Has anyone actually had this symptom disappear? How?

It seems that I have read alot about people with head pain seem to be refractive in recovery?

Help!!

Much of what I read

Posted by Beverly (Member # 1271) on :

Hi SisterSue,

I'm sorry you are in so much pain...and for 17 months now...

I didn't have horrific pressure, but I did have headaches all the time, some worse than others. The only thing that has really helped me with the headaches is being in treatment for Lyme disease.

Are you on doxy? This abx can make head pressure worse for some? Are you seeing a LLMD?

I wish I could be more helpful.

Posted by Kathi (Member # 2261) on :

I know this head pressure too and it is usually bothering me when my Babesia is acting up. It was once one of my worst symptoms. I have done prolonged courses of Mepron/Macrolides and i.v. antibiotics for Lyme and got rid of it. But right now OFF Mepron, it is coming back together with all the the babesia stuff. Who knows for sure.
Kathi

Posted by riversinger (Member # 4851) on :

I've found my head pain/pressure to respond to a number of things.

1. Antibiotic treatment. I'm now 8 months in.

2. Hormonal treatment, in my case thyroid and progesterone.

3. Osteopathic cranial sacral manipulation.

I still have pressure, though MUCH reduced. Same with the pain, except for cycles of it. But I'll take cycles over constant any day! I've had this head pressure/pain for 11 years in waxing and waning cycles, but the last two years was really bad.

I personally feel that even if a symptom is ultimately caused by Lyme, it has multiple impacts in the body, some of which we have the means to treat. The trick is finding out just which system is impacted, and how. Then you can treat it.

Posted by willowtree (Member # 5268) on :

i suffer with this being my most prominent and debiliating symptom for over 2 years. i relate with great empathy to your plight.
after a year of telling a variety of quacks from all different specialties that my headaches are from pressure and i think something is seriously wrong with my csf pressure. finally a llmd last week right away acknowledged that my csf pressure IS and DOES give me these headaches.... i can't even describe the feeling of just being validated.
he prescribed diamox (which was a drug i had read about and even mentioned to doctors and they ignored me saying that i was nuts).
i haven't even been able to try the drug because i just picked it up from the phcy yesterday. - but maybe you could suggest this to your llmd.

i wish you the best and if the diamox makes a difference for me i will email you and let you know.

fellow head pressure junkie
willow

Posted by SisterSue2 (Member # 5484) on :

Hey Willow-

I was given diamox by an LLMD and I tried one half of a 250mg pill once and my head pain seemed a bit worse, so I was reluctant to try another.

Do let me know how you do, maybe I need to keep taking it.

Sis

Posted by TheCrimeOfLyme (Member # 4019) on :

Sistersue:

Antibiotics! (And not all of them)

I started on amoxy 4000 mg a day for 6 months straight and that symptom was knocked out in one week. Literally.

After that, all heck broke loose and I was never /kinda am still not able- to get back to where I was.

LLMD tried me on clindamycin ( wonderful intracranial pressure RISER) and then later doxy ( oh goody- another intracranial pressure riser)

and then, I left and got another LLMD who put me on Biaxin XL 500 mg x two a day.

Two weeks into it? Gone. Seems the reason being WHY the amoxy and the biaxin *MAY* have worked for the pain and pressure in my head? They both have antiinflammatory effects. Problem with the resurgence of my symptoms though was due to the use of amoxy

WITHOUT flagyl. Pencillins are known to push to cystic form. Problem they stayed? No one still yet - gave me flagyl.

Til now.

My new LLMD did say however, that alot of that head pressure and head pain ( and neck) is babesia, which I will be starting on mepron for in 12 days.

JUst a note- my llmd started me out on 250 mg of biaxin a day due to my six month skit with what I thought was drug reactions ( was really not) and the 250 did NOT cut it with the pain and pressure

and I was VERY frustrated. It was not until I uppped to 500 mg of biaxin and within two days, the head pain and pressure LEFT.

I know you are discouraged- please get on abx, just the right ones.

Posted by griswoldgirl (Member # 5365) on :

I have this problem too. I am on diamox 500mg a day with potasium and it helps a lot. I usually sit in a quiet room and ice my head completley from my neck to the fron of my brow for a while and that gives me some relief.

I was on clindamycin for a month with rocephlin and mepron and that seemed to bring them on like gang busters. I, too, find it one of the most frustrating symptoms. Mine comes along with stiff spine and neck now for a month.

I have read articles on www.jemsekclinic.com that these headaches from cfs can even mimic sinus trouble and going through that too.

I just lay low when I get them and have gone through a period of time this last month where I went to bed with it and woke up with it with little to no relief for 2 weeks. It is madning.

I do have coinfections and that is what is causing my pressure so I am told by my LLD. I am now on only rocephlin for one week and then with flagyl push next week and then start zithromax in a week and a half--hoping herxing and headaches are not as bad with that med.

For me every time a new med is introduced so is a new constilation of symptoms ranging from psychological to physical. Iv treatment for chronic lyme--I have had it over 15 years, misdiagnosed with 20 other things until march--has been the biggest roller coaster ride of my life. I have no idea day to day what I am going to feel like both physically and emotionally. It is tough!!

I hope the ice suggestion helps --it helps me a lot. Yesterday was a bad headache day and I spent 6 hours in bed babying it and was able to take my son to see Spiderman 2 at the end of the day and enjoy myself. by 10pm headaches was back and I was back in my cave with ice.

hang in there

Cathy

Posted by SisterSue2 (Member # 5484) on :

Griswold,

How is your headache?