It is a worry, but another hurdle to get through, good you can think of your friend to give you strength…
I doubt you will have to cancel your vacation as long as you feel ok. Do you do any meditation? If not, It can be hugely helpful to do some deep breathing and guided meditation to manage the anxiety. Also lavender essential oils and lemon essential oil are part of my morning and night routine. Coming up with anxiety management techniques is critical to start now so that when you are in the situations that escalate it badly, like when you go to the neurovascular doc or are getting ready for the procedure, you have found what works for you. For example, I know that I am ok being in the MRI or PET machines ( i have had 2 different cancers) as long as I keep my eyes closed from the time I lay down, especially my eyes have to be closed when they put the cage on my head etc. One time something happened when I was in PET machine, I opened my eyes, just for a moment, but long enough, and literally it was at the end of my nose and I went into a full blown panic attack like I thought I was going to die level that I had never experienced. But because I had been doing all these exercises, my brain found a string and was able to grab it and start breathing by instinct enough to let me start the thought that I was not dying and I was safe and focus on breathing and I was able to breathe my way back. It took a lot of focus, but I got there. My point is that it was only because of the practice daily of focused breathing and breathing as a reaction to any frustration that my body and mind did that as an instinct when my logic could not get me there. Just a thought…Anxiety is so hard!! By the way so funny! I am seeing Dr. Hepworth on September 17th at 8 am!
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Jen, thanks so much for sharing your experience and the suggestion. I do meditate and also see a talk therapist, but it is hard for me to meditate sometimes when it’s not guided. I need to practice more. Since I read your comment I have been trying it and it has been helping me with my insomnia — mainly I do “body scans” where I focus on relaxing the tension in my body step by step. I am sleeping SO much better now that my pain is like 85 percent better. I went on a hike Sunday and had horrible symptoms, mainly headache and dizziness, felt like I was going to pass out and need to be rescued off the mountain! But I think it was a combination of exertion and that it was just so very hot.
I have read a lot about angiograms and the recovery afterward it seems to vary a lot. Some people are told not to drive for several days and some people are fine the next day just a little sore. We wanted to hike on our vacation so I was thinking if I had the angiogram beforehand I might not be up for that, but I really don’t know! It is still not scheduled… So I am guessing it will not be before it anyway. I am hoping it will be the week of the 24th like the office said.
My appointment with Hepworth is at 9:30 on the 17th so we probably won’t run into each other but how funny. I have been wondering if anyone else here has been in the waiting room with me. Hope your appointment goes well!
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Hi Blossom,
I would not recommend hiking. Until you are stable you should generally keep your heart rate below 100-110. Some people do not even tolerate that much activity. My physical therapist really helped reset my expectations and made me realize that taking it slower can help me make bigger lasting improvements in the long run. Every time we do things that increase the pressure too high (sounds like from your symptoms that might have been what happened) it is causing injury to the brain and can set us back. I finally realized pushing through for the immediate satisfaction of not missing out was not worth the days to sometimes weeks of setback or lack of improvement I suffered after. Light walking is probably the most you should plan until at least after the angiogram and until you see the physical therapist. (Just my 2 cents though:)
Jen
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I’ll definitely be taking it easier. I did ask both the neurovascular doctor and Dr Hepworth if it was safe for me to exercise and they both said it was, just to back off if symptoms worsen. In the past it actually helped my pain a lot but this past weekend I think it was just too hot and too hard of a hike.
The heat used to make mine alot worse…& exercise too.
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I am sorry, I didn’t consider that If you have been super active, you may tolerate a higher level/pulse than me. This really set me back over the last 3 years. I would say though that I was pushing through activities I should not have often without realizing that was what I was doing and I have paid the price. Listen to everything, not just the pain. Pain can be a late symptom. I am doing more than I had been and having less symptoms because I went really slow and learned what the signs were that I was overdoing. Mainly my heart rate and pulsatile tinnitus these days.
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Yes! Exercise actually tends to (generally) help me, I just have to be aware of whether I can actually handle it or not before I go for it. Especially during the pandemic I think exercise can be incredibly important for managing any mental health issues that we probably all have from a chronic illness, since we can’t really do anything else. IF it’s well tolerated, that is. I am also in Colorado and have been trying to get out to the mountains a couple of times a week to climb and be in nature. Especially since I can’t sing anymore, feeling “strong” in this way has been hugely beneficial to me and it’s one of the only things that makes me feel fulfilled lately. Just be careful and look out for ways YOU know you’re overdoing it.
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I’m not in great shape or anything but I generally try to hike several times a month if it isn’t too snowy or cold. This past time I just had to stop and rest way more often than normal and my head was pounding. It was so hot, and my partner pointed out it was smoky too because of some fires in the area. Not sure if that would have affected me but I was freaked out, and sadly really frustrated that I felt like I couldn’t do it. I’ll definitely be more conscious of that in the future, I don’t want to injure my brain or have a setback. When I asked my neurovascular doctor doing the angiogram if I can exercise he said I should “live my life” and back off and rest if my symptoms worsen. He didn’t really elaborate though.
@kittchenita exactly, with the pandemic, I am just really struggling. I lost my job so going outside and up to the mountains has been one of the only things I’ve had to look forward to. It’s been a nice distraction at least. We are so lucky to have so many options for recreation! Hopefully it was just the heat that got to me but I will not be doing anything too difficult at least until I have the angiogram to see what is going on.
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Kitchenita, well said!
I guess what I am trying to caution after making this mistake myself is that It is such a fine line and sometimes can be so hard to not push past the signs when the other benefits we feel can feel so good at that moment.
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I appreciate it Jen. My boyfriend would agree with you! The whole time he was saying let’s turn around but I wanted to push through it. Lesson learned!
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blossom,
I did the same after I had my first surgery - pushed my body too soon, & I think it really slowed some aspects of my recovery. I realize you’re still pre-op but trying to keep symptoms as calm as possible will help your comfort & anxiety levels considerably. Listen to your boyfriend in the future. 
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Well after about 20 days on the blood thinner my headaches are back. It worked really well for a while and I don’t have the lump in throat feeling or the neck pain as bad, but the headaches (on right side behind right eye) are pretty brutal. Nothing OTC really helps but tramadol does. Right now I’m taking one per day and already panicking about running out (even though I have plenty, Dr. H gave me 25 at my last appt.) They came back when I was in the mountains (our cabin was at 10,000 feet) and at first I wondered if the high altitude brought them on but now that I’m back at my usual 5300 feet, they’re persisting. Ugh.
I still have not scheduled the angiogram which is very frustrating. On sept. 1 I will be on a new insurance plan, so they’ll have to do the pre approval all over again. I was hoping I’d have it over with by now but I’ve called them about once a week and still no progress. Yesterday I called and gave them my new insurance information. Hopefully insurance will approve it quickly. I’m anxious about it and also wanting to get it over with so I can be further on the path to surgery or treatment. In the end having it done on my new insurance should be better because I will pay less out of pocket, and I am unemployed, but I hate how long this stuff takes.
I have an appt with Dr. H the 17th and I’m supposed to have had the angio by then… Though somehow I doubt I will. So now debating do I push it back or keep the appointment? I’m inclined to keep it so I can see him and get a refill of the meds, but I guess I’ll wait until I know more either way.
So frustrating for you with the delays, insurance, & now the headaches back, so sorry for you…Personally I’d keep the appt with Dr H for now, just so that you know that you can get more meds. I know you said you’ve been ringing regularly; could you ask to be put on a cancellation list for the angiogram if you haven’t already? & also stress to them that you need it doing & results to Dr H before your appt on the 17th, might help move things, although I’m guessing you’ve done that too!
Sending you a hug! 
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Yeah, I think I’m going to keep the appt. if nothing else maybe Dr H can try to help expedite the angiogram or something. I don’t feel like I get anywhere when I call, the office just keeps saying that they will call me when it’s approved by insurance. Last time I mentioned I’d like to get it done ASAP because I am in pain and the person was confused and just said,” “well it’s just an angio right not treatment or surgery?” Um right but the sooner I get it done the sooner I can figure out what’s going on and maybe get treatment! The doctor said it would take about a month max for pre approval and then scheduling and that was on July 27 so it’s frustrating. My old insurance was crappy so maybe it’ll be approved faster on the new plan, who knows.
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Dang, the healthcare system here is really messed up, isn’t it. Especially with this referral/prior approval nonsense. My sister works for a company that is a go between for doctors offices and pharmacies to process prior approval issues, so I’ve heard many stories about how ridiculous it is.
So sorry your headaches have come back and that you’re experiencing issues getting in for your angio. I second Jules’ advice about making sure the angio place knows your time limitation, and I’ll maybe add that once you switch plans it might be worth calling the insurance company and explaining your issue to them. Of course, they’re an insurance company so they might not be willing to do anything, but at least you’ll know you’ve tried.
I’m not sure how far outside Denver you are, but if you end up cancelling your appointment to avoid driving in or whatever, it might be worth calling the office and asking if they can get you a refill before your appointment. Idk anything about the drug you’re on specifically, but I’ve definitely had doctors who were willing to call in a prescription for me if that was the only reason I’d be coming into the office. Of course, if it’s not extremely far out of your way, going to the appointment might be worth it. Just an alternate option in case that makes more sense for you.
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Thanks @kittchenita I’ve been thinking about you hoping your appointment next week goes well!! I live super close to his office but I just don’t know if it’s worth going when there’s not much to report. Since the med is a controlled substance they tend to not like giving out refills without an appointment but you’re right I may try to call and ask.
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Hey blossom,
At 10K feet you were practically in orbit 
. I would blame the altitude on reigniting your headaches & maybe now that you have your feet back on earth 
, the headaches will gradually subside? Not sure how long it could take for those vascular tissues to recover.
Hooray for insurance but BOOOOO for the sluggishness in the system. I’m glad you have a new ins. plan & hope it’s better all the way around. Hopefully you’ll be granted the angio appt. prior to your appt w/ Dr. Hepworth. Remember “the squeaky wheel gets the grease.” I think calling your new insurance company & giving them the “down low” is a great idea. Certainly won’t hurt!
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You’re probably right @Isaiah_40_31 because yesterday was a bit better and today I am feeling good. No pain meds needed! I’ll take it. Even intermittent relief and a few bad days is better than the constant pain I had before.
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Today I finally scheduled a cerebral angiogram with neurovascular surgeon on Oct. 2 first thing in the morning. I am very scared, worried, anxious but ready to get it over with. Kinda worried about how much this is all going to cost as well, but insurance is supposed to have pre authorized it. I will have to get a Covid test the Tuesday before since it is at a hospital. Oh well. Feeling positive that things are finally moving along again!