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It's been a rough couple of weeks

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Posted 1/27/2014 12:53 AM (GMT -5)
I have been suffering from terrible migraines the last two weeks with only two days that were partially pain-free. (I also had a migraine every day from dec 1- dec 21) And I'm used to migraines but these are torture. They start in my neck are run right up my skull and I'm done for the day despite any meds I take. My neurologist has changed my meds so many times he really doesn't know what direction to go in next.
The weird thing is...is that I didn't realize HOW BAD mentally I felt until today because for some act of God I didn't have a headache for the last two days. I think just having those two days off gave me the mental break I needed. I realized how low and hopeless I had started to feel. Physically I wasn't able to do much except lay on the couch, but mentally I couldn't do anything or didn't want to do anything. It actually scares me now how badly I felt. I am not normally a depressed person, but I was definitely getting depressed and starting to withdraw. Today I felt myself rushing around to do important tasks before the migraines come back. I have plenty of other symptoms but they all fall away in the face of these migraines. I pray that I continue with these headache-free days.
I am taking doxy and clindamycin right now. My LLMD doesn't want to "add anything else because of the herxes" but I feel like I need herbs that will aid my neuro symptoms. Has anyone else experienced this? Any suggestions?
Posted 1/27/2014 7:30 AM (GMT -5)
Hi desperate4dx,

I'm sorry you're also going through a rough time with your head. My specialist tries to make me see that there is not much to do about it. I'm a little bit 'jealous' about my sister tolerating Topamax, it really helps her a lot.

The migraine attacks really stop you from doing anything. I have experienced this, but haven't found anything for now that can help me. If it is a 'normal' attack that I feel coming up, I can take aspirin with cafeïne, it makes it less intense. Once it's there, I can't do anything about it. I had some relief with Propranolol, but that seemed useless last week and this weekend.

Are you still looking for a LLMD Desperate? Have you posted a thread in the past, asking people for a LLMD in your area?

I hope you get some relief for a larger period of time very soon,

Marie

Posted 1/27/2014 8:54 AM (GMT -5)
Marie,

Yes I am seeing an LLMD who has basically just prescribed the abx. He doesn't much address my symptoms...so I am looking around for another doc. I too have had success with topamax and propranolol in the past amongst other drugs, but after a few months they lose their effect. I do use relpax and maxalt to halt the headaches once they start, but as you said, NOTHING touches the bad ones! I also have fiorecet on hand, but it doesn't do much. And I think I'm immune to excedrin type products as I have been fighting these headaches for over 30 years.
I'd like to find an LLMD that is more integrative, mine so far only uses abx and really doesn't explain much at all. I don't know if he is following a protocol or if he is making up as we go along. He has been at it awhile and I don't doubt he is smart, we are just not a good match maybe. I'm a nurse, so I don't need very little thing explained or my hand held every step of the way, but getting info outta this guy is like extracting teeth as he is walking out of the exam room. And of course as we all know...the visits are not cheap!!
So my plan is to find someone who will be willing to add herbs to my regimen. His explanation to me that it may take up to 3 yrs on abx is not sufficient. If I'm going to subject my body to years of abx, I want to maximize that time with other treatment modalities. My dream would be to have an LLND, but seems I'm lucky to have an LLMD Close enough for me to drive to the monthly appt.

And to end on a good note...I woke up once again headache-free! I had a mild stiff neck, threw some heat on it, but was able to walk my kids to the bus stop :)
I am so curious about what is causing this "break" in the cycle so I can keep it going. I know I have read on this forum that Lyme and co infections do run in certain cycles, but so far I haven't pinned mine down. I really should start journaling.

Thanks for posting and I hope that you have better days as well. I know better days are ahead, we just can't lose the faith.

Dawn
Posted 1/27/2014 10:13 AM (GMT -5)
desperate4dx - I agree with you. Its very important with this disease that you have the full confidence of your LLMD. Because the treatment protocol is so controversial, its mandatory you get to ask a lot of questions and have them answered fully by your doctor.

Then again, Im saying this now. Earlier in my treatment, I was simply glad to have ABXs for more than 3 weeks. I would have accepted just about anyone.
Posted 1/27/2014 5:03 PM (GMT -5)
Why not try starting a new thread asking for help in locating another LL doc, Desperate?

And would you consider acupuncture? It works well for pain if you find a good doc.
Posted 1/28/2014 3:34 AM (GMT -5)
Desperate,

I would try to post a new thread asking for the kind of dr you are looking for, like Traveler suggested. Accupuncture might help too. I still haven't found one where I live. I want a good one, with enough medical knowledge. No luck so far.

Good news though that you're having a few days 'off'. It's a strange feeling when you're used to having the headaches all the time. It's like being in another universe, totally different feeling.

My dr seems to have the same error in his system like mine has... He's very capable, but rarely a connection. I think it's very frustrating. When he's in a good mood, and I'm making a joke, it sometimes breaks the ice. That's all. Luckely mine decided that 15 months of abx is enough proof that it's not working in my case and only making me sicker.

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