Just checking in

Hi Kim
I keep thinking about you. Just logged on after reading another person’s issues with their dad. These ruptured and unruptured annies cause so many worries for patients AND for family members too. Anxiety would be at the top of my list if they ever spot another one. I’m not due for another MRI until May 2023.

@Cathy1 i do worrie everyday i have very bad anxiety and right now i have this awful cough and im so afraid of coughing too hard so my anxiety with my new anyerism is sky high but im just trying to move on and not make myself crazy but good news the new anyerism has not gotten any bigger so thats good news but we are still watching it. Next scan is may 30th so well see then fingers crossed :crossed_fingers:

Sending prayers for good news that your new one stays the way it is! Not sure if I am allowed to tell you what I use for anxiety but here goes……Rescue Remedy. Its all natural made with different wild flowers and I use the spray. It works immediately. Maybe you can check it out at a health food store near you. There are small lozenges that my sister carries with her in her purse, car, etc. she finds they work best for her.

Yes you can share what you use for anxiety, as long as it’s legal. It’s how we learn here! I found out about Rescue Remedy from my cousin who was using it on her cat out in CA. We use it for the rescue dog my Mom adopted. A drop or two on a treat or in the water bowl during thunderstorms and fireworks does wonders!

Besides the Rescue Remedy, you might want to try relaxation breathing, exercise, chamomile tea (my personal favorite) or look into the different essential oils.

There are so many choices for Rescue Remedy products. Some are specifically for pets.

Absolutely! I wouldn’t use the Rescue Remedy for our dog on me, the products for humans aren’t astronomically priced…

After a rupture and SAH my neurosurgeon told me my headache could last a day, week, month, years or the rest of my life. Doctors have said it’s a migraine, anxiety, tension or a stroke headache. They only thing they don’t know is what to do about it. I had a thought just a while ago and wonder if the answer is add yet another doctor to my ever growing list of specialists.

I know somebody who is going to a Pain Institute to try to delay back surgery. My personal opinion is they are money sucking Medicare thieves but they have the pain medications along with other things they will try to make sure you come back once a month. I thought I might try calling another one to see if they have an easier program that doesn’t involve me getting addicted to whatever it takes for me to go back once a month for the rest of my life.

I looked at Rescue Remedy and I would rather have a glass of wine. Rescue Remedy is 27% alcohol.

I wish you the best of luck. From my experience, I would suggest you listen to your neurologist. It may just be me but I haven’t found another doctor who wants to cross that line and they all want my neurologist to make the calls. Last week I was put on maintenance mode with my neurosurgeon so I’m on an as needed basis. Just not sure where I am going to find my “hero” now.

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Post craniotomy I was told exactly the same thing “It’s a migraine…” “It’s a tension headache…” “You’re just stressed…” Yes, I’m stressed because I’m in agony. I’ve seen more drs/specialists/gurus than I can count on my fingers (and toes) and they all have their own opinions, their own views and are all quick to discredit the other’s diagnosis. I trialled all of their treatments/remedies/medications but none have been my ‘key’. So then they put it back on me ‘You just have a low tolerance to pain…’, but what I have developed is a low tolerance to know-it-all Drs. They have no clue just how bad BAD can be.

I’ve attended a Pain Clinic and been told ‘manage the best way you can’ which is what I have to do anyway, telling me the obvious doesn’t help at all.

Merl from the Modsupport Team

Mary, I call myself a frequent flyer to PT and I can assure you, they aren’t “money sucking Medicare thieves”. PT has a good place in our lives when needed.
I wasn’t on Medicare when I started with PT back in 1994. I was working for a friend in his commercial welding shop after graduation from university. He wanted to prove to the VP that women could weld and I needed a job whilst looking for one in my field. I was drilling into an I-Beam when the bit caught on something in the steel. My finger turned sideways with the pads almost at the top without breaking! I thought I was lucky as a young man the week before had broken his wrist. Come to find out from the PT that it would have been better if it broke -less painful and quicker to heal.

Went back in the early 2000’s to try to prevent foot surgery which I eventually had in 2009. It was one of the Podiatrist’s top two worse cases and didn’t know how I was walking.

In 2012, I went to a pain clinic which was connected with PT to avoid lower back surgery. No room for a shot in the lumbar area and we were all crying. I may have broke the poor RN’s fingers. I certainly bruised her hand. I had 18 dislocated vertebrae when I was hit whilst riding my horse back in 1975. The day I had no reflexes from the waist down, I was sent to a Neurosurgeon and he operated the next week. No room for the cage as my spinal cord had been “scrunched” in there. He didn’t know how I’d avoided surgery for so long, again one of his top two worse cases. I had to go to PT afterwards so I could get everything working again.

I’ve been several times for my neck but a couple years ago was told there was nothing more that they could do for me and not to do much stretching anymore, again trying to avoid another surgery of which I’ve been a candidate for several years now. I can’t have shots as I don’t handle prednisone well neurologically.

Stroke patients, both ischemic and hemorrhagic as well as TBI have benefited greatly with the help of Physical Therapy. Not to mention those folks who’ve been in an accident. They can help with both fine and gross motor coordination, swallowing, etc. PTs like Occupational and Speech, provide skill sets for those of us willing to do the work they teach at home and after the patient has completed their time with them.

Physical therapy is work, it’s not supposed to cause pain. They don’t have a magic wand and neither do they have the magic pill many think they will get from a doctor that just erases the pain. It takes someone who is willing to be committed as they are in getting our health back to where we would like it to be. The patient has to be committed in continuing those stretches and other work that has been taught to them once they leave. If the patient doesn’t have it in them to do the work outside of the PT facility, it’s a waste of time for the PT to work with them.

That’s pretty much where my neurosurgeon left it. I will get used to it and be able to tolerate it. I will but I bet if he had this daily pounding they wouldn’t get used to it and tolerate it. They would get some medication to make the pain stop. I’m like you, doctors can be such pains in the petunia. The more doctors I get, the worse it gets. And the thought that with a PCP, cardiologist, neurologist, vascular surgeon, ear, nose and throat specialist and a pulmonologist I can’t get a prescription to help with a headache just frosts me. Over a month ago I broke out with a rash on my legs. Been there before many, many times. From? Reaction to new medication, bite from something in the yard, anxiety reaction, who knows. My old PCP didn’t care why and gave me a “tub” of hydrocortisone 2.5% ointment. I would use it a couple of days and the rash would be gone. Well, it’s back. My new PCP put me on a new medication a month before the rash appeared and my stress level is at about 25, with 10 being the highest. I grabbed my hydrocortisone and it wasn’t working. Odd, then I noticed it has expired in 2018 and has a throw out date of 7/18/2019. I take it to my new PCP and instead of hydrocortisone, which I know works, he prescribed Triamcinole .1%. Day 5 and the rash and itch is spreading. I go back to him in a month and if this doesn’t work, he’s going to send me to a dermatologist. Just what I need. When my PCP has to send you to a specialist for every single thing from head to toe that goes wrong, I need a new PCP.

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You’re comments on PT, Physical Therapy, are very true. I have had 5 sessions with PT. The last time was due to my loss of balance. I stumble around like a drunk. Why? Just like the headache they don’t know. PT said I wasn’t where they wanted me to be but I had improved and Medicare had given me an extra 4 weeks. So I was there 3X’s a week. I showed up, I did the work and I continued and I still do the exercises they sent home with me that I can do.

I had many TSIs in 2005. TSIs are a walk in the park compared to a SAH. When I had a TSI in 2005 while they were giving me a MRI, they decided they better get me to a hospital that could help ASAP. Within 4 hours I was in an operating room and they tried an angio on my carotid artery. They couldn’t get through because it was 90% blocked. That was Friday night. The surgeon scheduled me for a endarectomy Saturday morning. I came through fine. My vocal chords became paralyzed which made me sound like Minnie Mouse. They went back in and fixed that. The surgeon told me they were in such a rush to get the blockage taken care of because he was sure I would have had a major stroke before the weekend was over if they waited. I didn’t need any physical therapy after that but if he told me I did, I would have shown up and done the work. Nobody can help me if I don’t try to help myself. I don’t expect a magic wand but I do expect a doctor who is willing to listen and, at least, try to help. I said absolutely nothing against physical therapy.

You may be and others may be lucky enough to have a Pain Management Clinic that isn’t trying to rob Medicare with one hand and you with the other. I have NO intention of wasting money going to Pain Management,enter into a contract with them for help for a headache. If they are or aren’t thieves probably depends on who you use but when the Pain Management Clinic that my SO has been using gives an injection in the wrong hip and then has a big laugh about getting one past Medicare isn’t somebody I need in my life. I have enough doctors like that. The fact that they tied the hands of medical physicians to prescribe pain medication is ridiculous. One thing I believe is I am sure if I go to a Pain Management Clinic and ask for something for a headache they will think I am a pill head and if they see the list of qualified physicians I have, they will think I am doctor shopping.

I am apparently not the only person who has the headache problem and I am sure they are just as frustrated as I am and that frustration only makes the headache worse. But nobody can say I haven’t shown up, am still showing up and doing everything I can do to help myself. I’m just sorry that I even have to consider adding another doctor to my list…for a headache.

At this point I think the best thing for me to do is sign out and be gone. You have a great group here and a great bunch of people. When I first found the site I was able to get a lot of good advice and help as I blindly tried to figure my way through this maze. I have apparently stepped on another member’s ties and I never intended to express my opinion and “piss off the pope”. It’s not the first time but it will be the last.

I wish everyone the best of luck with the darkness ahead of us all. But this isn’t a safe place for me any more.

With that, I exit and I will never darken the door again.

Mary, if you feel the need to go, because of my reply, then you need to go. Perhaps asking why I went on a rant would’ve been better. We could have clarified my response.

Since Mary has chosen to leave, let me tell everyone else that for me there isn’t darkness ahead. Yes, I have some dark days when pain gets the best of me. But it’s a mind set I have to keep looking for the positives that are many. I hope everyone can see positives every day. If I’ve said something and a member takes offensive, be strong enough to question me on it. I am human, I make mistakes, if I’m wrong I will admit it.

I survived after 2 ruptured aneurisms. The weird thing is that I never had any headaches with either one. My only symptom was the lack of feeling one side of my body (which has not resolved yet). I understand the anxiety and no one seems to understand that, which is why I am on this site. Please keep us updated.